This interview took place on April 29, 2008, and was conducted by Norman Sussman, MD.

 

This interview is also available as an audio PsychCastTM at http://psychcast.mblcommunications.com.

Disclosure: Dr. Allen reports no affiliation with or financial interest in any organization that may pose a conflict of interest.

 

Dr. Allen is both assistant professor in the Department of Psychiatry at the Mount Sinai School of Medicine (MSSM) in New York City and director of psychological services at MSSM’s Center of Excellence in Compulsive and Impulsive Disorders. Her research interests primarily include the treatment of disorders within the obsessive-compulsive spectrum, including obsessive-compulsive disorder and body dysmorphic disorder. In addition, she trains psychiatrists and psychologists on these conditions. Dr. Allen is a widely published author of numerous original research publications and review articles.

 

What are the basic principles upon which cognitive-behavioral therapy (CBT) is based?

CBT refers to a general approach to therapy that includes many different therapies (eg, behavior therapy, cognitive therapy, dialectical behavior therapy, rational emotive therapy) that share the same general philosophy and basic principles. These therapies focus on relieving current symptoms. CBT is an active, directive therapy wherein a therapist acts as a patient’s coach and collaborates with the patient to determine the goals of treatment and the process. The work outside the sessions is an important part of these therapies. There is a big focus on applying what is learned during sessions to the patient’s life. CBT tends to be very evidence based.

One of the most basic assumptions these therapies share is that emotional reactions come from our interpretations of events, not from the events themselves. An ordinary event can seem like a catastrophe to people with obsessive-compulsive disorder (OCD) because of how they are interpreting it. For example, if someone touches a patient with OCD, this action could cause the patient to internally panic. The patient may feel contaminated and be concerned about bringing this contamination home to his or her children, exposing them to serious illnesses. In this example, CBT would focus on identifying, challenging, and modifying the OCD patient’s faulty beliefs and reasoning.

Basic learning principles underlie the behavioral techniques. When they are applied to OCD, the learning principles would predict that the compulsive rituals and avoidance associated with OCD increase a patient’s fears and reinforce his or her obsessions. For example, an OCD patient who repeatedly checks the stove to confirm that it is turned off feels relieved by that checking. According to learning theory, this relief is reinforcing and increases the patient’s need to check. Taking part in these rituals or avoiding uncomfortable circumstances prevents the fear from subsiding; that is, if the person could resist checking the stove, his or her anxiety would end.

 

Is there empirical evidence showing the effectiveness of CBT for the treatment of OCD?

Most studies concerning CBT for OCD focused on the major components of CBT, specifically exposure and response prevention and cognitive therapy. In the studies of exposure and response prevention, the participants are placed in a situation that provokes their OCD and they resist the ritual or the response they feel compelled to perform. Empirical evidence is provided by multiple randomized clinical trials1-4 in which exposure and response prevention outperforms an active treatment control. In general, these trials cannot be double blind as the therapist and patient know which treatment is used. However, there have been trials5,6 comparing exposure and response prevention conducted by a therapist versus by a computer (with the patient also using written self-help materials) that show exposure and response prevention is more effective than placebo or control treatments in reducing OCD symptoms.

The most powerful evidence for the efficacy of exposure and response prevention comes from brain imaging research during the early 1990s. Studies7,8 using positron emission tomography scans prior to and following treatment showed that exposure and response prevention as well as serotonin reuptake inhibitors normalize brain activity.

In terms of the cognitive approach, correcting the patient’s cognitive errors and faulty reasoning is the primary focus. There is evidence from several randomized controlled trials9-12 showing that cognitive approaches are as effective as exposure and response prevention in certain ways and definitely more effective than control treatments. However, the studies showing cognitive therapy to be as effective as exposure and response prevention include behavioral experiments. In these experiments, the patients participate in brief exposures to test the validity of their fears, that is, to see if the feared consequences occur. The major difference between exposure and response prevention and cognitive therapy in these trials is that the exposures were shorter in length in the cognitive therapy conditions. In addition, it is not clear what other kinds of exposures the patients may have faced during the studies, so whether cognitive therapy is effective without exposures is still debatable. At this point, it is unclear that exposure and response prevention is not the central or most powerful curative element in OCD.

Cognitive therapy research indicates that the main drawback to exposure and response prevention is that some patients will avoid such therapy altogether or will drop out of it because they find the very idea of the exposures too scary. I think it is important to consider that perhaps exposures do not need to be as long as we had believed in order to be effective. In reality, most cognitive-behavioral therapists use both exposures and cognitive techniques. Teasing apart the contributions of each might not have that much of an impact on the treatment in the real world.

 

What is relaxation training?

It is a part of CBT that is frequently used, but it is not an effective monotherapy for OCD. However, OCD symptoms are often exacerbated by stress; therefore, relaxation and stress management is part of the treatment. For patients who have a terrible time tolerating anxiety and a phobia of the anxiety itself, decatastrophizing anxiety and helping them learn to be less anxious is imperative.

Relaxation training usually has two elements, ie, deep breathing and muscle relaxation. Deep breathing techniques are taught in sessions and practiced out of session. After patients learn it, they can apply it in stressful situations, possibly reducing the autonomic elements of stress. Progressive muscle relaxation techniques ordinarily include having the patient listen to a 10–30-minute long tape that gets him or her to relax each muscle group, starting with the toes. The goal is to have patients learn what relaxed muscles feel like while following the tape and be able to relax them in the real world when they feel stressed. The more patients practice and perform these techniques, the more relaxed they can become.

Some patients with OCD will get extremely anxious (eg, sweat, have palpitations) when they are in situations that provoke their OCD fears. For example, a patient of mine with contamination fears had a lot of trouble at work when colleagues would pat him on the back. Since he could not avoid this or immediately leave and wash his clothing, it was helpful for him to learn relaxation techniques to help him to control his anxiety in these situations. He learned deep breathing, so as soon as he started to feel symptoms of anxiety he would take a few deep breaths. This often turned the situation around and enabled him to stay and behave appropriately. Relaxation training is not going to cure the disorder, but it can make unavoidable situations more manageable. Training patients to be aware of their anxiety early is key. If they wait until they are already panicking, then the techniques are not as effective.

 

Does CBT help people realize that their symptoms result from the illness?

Yes. Most patients with OCD have fairly good insight. However, when they are faced with a scary situation, a contamination situation, or a situation wherein they think they did not turn off the stove, they might lose their insight in those moments and think there is real danger. If patients completely lack insight, it presents real problems in treatment, but it is more likely for insight to be a problem in OCD situations.

It is very valuable for patients both to know that their symptoms result from OCD and to be able to identify the specific thoughts and behaviors related to the disorder. Some patients might not know about OCD; they may think they are going crazy. When a clinician educates the patient about OCD, it can be reassuring to find out what the problem is and that there is a name and treatment for it. In addition, I typically use a cognitive assignment wherein people label their OCD thoughts and behaviors to help them become aware of when their thoughts and behaviors are an expression of their OCD. Over time, labeling helps patients with OCD to recognize that a thought or behavior is OCD rather than a realistic concern or reaction, ultimately helping them to be less upset by their intrusive thoughts and to resist performing their rituals.

 

Do symptoms get worse during the course of treatment as the patient attempts to alter behavior or thoughts?

When patients are in CBT, the exposure and response prevention exercises will be more stressful than the same situation would be if the patient just went ahead and performed an OCD ritual; that is to be expected and the patients should be educated to understand that. However, trying to do too much too quickly can be a problem. It is important to make sure that the exposures are not too stressful for the patient. The goal is for the exposures to be tolerable, to increase anxiety but not so much that the patient will resort to a ritual to reduce his or her anxiety; this is considered necessary for exposure and response prevention to succeed in reducing OCD symptoms. An exposure can backfire if it is too severe because the patient can get extremely upset, lose confidence in the technique, or even leave therapy. Having patients work on too many things simultaneously can also be a problem; a realistic plan of action should be created. If a patient tries to stop performing many rituals at the same time, the patient’s likelihood of success is lowered. For example, when a person decides to go to the gym every morning before work to get in better shape, he or she most likely will not stick to that plan. A more realistic exercise plan would have a better chance of being carried out.

Sometimes, symptoms will worsen during a fairly typical treatment. For example, the patient may have successfully reduced his or her checking the stove as part of an assignment but may find he or she is checking something else such as the windows to make sure they are locked. This situation does not usually create a problem, despite the worsening symptoms. Once they realize that another symptom is increasing, patients can usually reduce the behavior back to the baseline level and keep it there; if not, the increased symptoms can be specifically targeted in therapy. In my experience, a significant worsening in symptoms that cannot be easily reversed is usually due to one of three factors. First, another stressor could be increasing the OCD in general. Second, the patient could be completing assignments incorrectly and inadvertently reinforcing the OCD. Third, the patient may be at a major point of improvement and is getting anxious about that.

 

Is there a specific time course for treatment with CBT?

It is reasonable to expect to see improvement in as early as 3–4 weeks. If the patient is completing the assignments and the exposures, then he or she is going to benefit from therapy. Whenever a patient cannot complete an assignment, the patient and the therapist need to trouble shoot to figure out what might be interfering. If the patient is still not able to complete assignments after the first 3–4 weeks, the therapist has to consider the problem and discuss it with the patient in terms of possible treatment options. For example, it is possible that a medication could help the patient tolerate exposures. If a patient does not want to go on medication, the therapist can negotiate with him or her. The therapist could suggest that the patient try the exposures without medication for a few more weeks, but if the patient is still not able to do the exposures within that time period then medication will become part of treatment. That may motivate the patient to do the exposures.

Certainly after 6–8 weeks patients should notice that they can manage specific situations better, though they may not feel that the disorder is markedly improved. Results show quickly, but most studies are conducted within 12 weeks, which is not adequate time for treatment in most OCD cases. A clinically meaningful response will be found in that period of time, but there will be many residual symptoms. In private practice, I would generally recommend much longer treatment in order to do a better job of getting rid of symptoms.

 

How would the importance of consistent reinforcement versus intermittent reinforcement impact the treatment negatively or positively?

I think consistency is very important. There is a long line of basic learning research13 that shows things learned with random, intermittent reinforcement are very difficult to extinguish. For example, in some research conducted using rats, the researchers would train rats to press a lever to get a piece of kibble. Using continual reinforcement, the rat would get a piece every time they pressed the lever. Using random, intermittent reinforcement, the rats receive a piece of kibble unpredictably; the outcome of pressing the lever is unpredictable. Other rats might be given kibble consistently, say every tenth time the lever was pressed. When the researchers stopped feeding them, the rats that were fed on the random intermittent reinforcement schedule continued to press the lever for food for much longer than rats in any of the other conditions; the rats that were fed every time they pressed the lever stopped pressing the quickest. The lever pressing behavior was much more difficult to extinguish in the random, intermittently fed rats.

In OCD, the concept of intermittent reinforcement can easily be applied to reassurance seeking. OCD patients will often ask their families for reassurance (eg, whether something is contaminated), and families will reassure them to calm them, thus unknowingly reinforcing the OCD. If families realize this is reinforcing the disorder, they may attempt to stop it. However, they are often inconsistent in doing so. For example, patients may beg their families for reassurance and the families may occasionally give in and provide this reassurance. Based on learning theory, this is going to make patients continue to seek reassurance and it will be even more difficult to extinguish than if they had kept reassuring them continuously. That is, OCD patients will continue to ask for reassurance because it succeeds; they get the reassurance and it calms them for the moment. Importantly, not getting reassurance on a particular occasion will just make them ask more because they have learned that they will get reassurance eventually.

In addition, since the families are most likely to give in when the patient is upset and out of control, the patient’s more extreme behavior is selectively reinforced. Not only is the patient going to continue to ask for reassurance, but the intensity of the requests will increase since that is what is being reinforced and that is what persuades the family.

This can also be applied to situations in which a patient tries to resist performing rituals. The patient will resist until he or she cannot take it anymore. When the individual can no longer take it, he or she will give in to the urges and perform the behavioral rituals. The OCD urges are reinforced intermittently. However, there is a pattern—the more intense a patient’s OCD distress, the more likely he or she is to give in and perform the ritual, so the OCD is strongly reinforced. This is common among patients who try to apply CBT on their own. Numerous patients believe that CBT does not work based on their efforts to stop their rituals on their own. However, that is only because they intermittently reinforced the disorder.

It is common for OCD patients to seek reassurance from their clinicians and it is important for the clinicians to avoid reinforcing their patients’ OCD. I usually tell obsessive patients that they cannot ask repeat questions during phone calls or therapy sessions. They can ask any question once, including matters concerning particular side effects or whether or not something is OCD or is really dangerous. An obsessive patient can be very repetitive, and this is harmful to them. If a patient asks a question once and repeats it, a therapist should remind him or her that the question has already been answered, but that is all that should be done. The patient should not get to ask that question anymore. In explaining that to the patient, I emphasize how repeating questions is not good for them, not that it is bothersome. I tell them that performing these rituals reinforces their OCD and that I cannot be complicit to worsening their condition. PP

 

References

1. Marks IM, Hodgson R, Rachman S. Treatment of chronic obsessive-compulsive neurosis by in-vivo exposure: a two-year follow-up and issues in treatment. Br J Psychiatry. 1975;127:349-364.
2. Roper G, Rachman S, Marks I. Passive and participant modelling in exposure treatment of obsessive-compulsive neurotics. Behav Res Ther. 1975;13(4):271-279.
3. Lindsay M, Crino R, Andrews G. Controlled trial of exposure and response prevention in obsessive-compulsive disorder. Br J Psychiatry. 1997;171:135-139.
4. Nakatani E, Nakagawa A, Nakao T, et al. A randomized controlled trial of Japanese patients with obsessive-compulsive disorder–effectiveness of behavior therapy and fluvoxamine. Psychother Psychosom. 2005;74(5):269-276.
5. Marks IM, Baer L, Greist JH, Park JM, et al. Home self-assessment of obsessive-compulsive disorder. Use of a manual and a computer-conducted telephone interview: two UK-US studies. Br J Psychiatry. 1998;172:406-412.
6. Greist JH, Marks IM, Baer L, et al. Behavior therapy for obsessive-compulsive disorder guided by a computer or by a clinician compared with relaxation as a control. J Clin Psychiatry. 2002;63(2):138-145.
7. Baxter LR Jr, Schwartz JM, Bergman KS, et al. Caudate glucose metabolic rate changes with both drug and behavior therapy for obsessive-compulsive disorder. Arch Gen Psychiatry. 1992;49(9):681-689.
8. Schwartz JM, Stoessel PW, Baxter LR Jr, Martin KM, Phelps ME. Systematic changes in cerebral glucose metabolic rate after successful behavior modification treatment of obsessive-compulsive disorder. Arch Gen Psychiatry. 1996;53(2):109-113.
9. van Oppen P, de Haan E, van Balkom AJ, Spinhoven P, Hoogduin K, van Dyck R. Cognitive therapy and exposure in vivo in the treatment of obsessive compulsive disorder. Behav Res Ther. 1995;33(4):379-390.
10. van Balkom AJ, de Haan E, van Oppen P, Spinhoven P, Hoogduin KA, van Dyck R. Cognitive and behavioral therapies alone versus in combination with fluvoxamine in the treatment of obsessive compulsive disorder. J Nerv Ment Dis. 1998;186(8):492-499.
11. Cottraux J, Note I, Yao SN, et al. A randomized controlled trial of cognitive therapy versus intensive behavior therapy in obsessive compulsive disorder. Psychother Psychosom. 2001;70(6):288-297.
12. Whittal ML, Thordarson DS, McLean PD. Treatment of obsessive-compulsive disorder: cognitive behavior therapy vs. exposure and response prevention. Behav Res Ther. 2005;43(12):1559-1576.
13. Skinner BF. The Behavior of Organisms: An Experimental Analysis. Oxford, England: Appleton-Century; 1938.

e-mail: ns@mblcommunications.com

 

Dr. Sussman is editor of Primary Psychiatry and professor of psychiatry at the New York University School of Medicine in New York City.

Dr. Sussman reports no affiliation with or financial interest in any organization that may pose a conflict of interest.

 


 

Unlike most issues of Primary Psychiatry, the focus this month is on a specific clinical facility rather than particular diseases and treatments. In deciding to devote this issue to a discussion of the Stephen D. Hassenfeld Children’s Center for Cancer and Blood Disorders (SDHCC) at the New York University (NYU) Langone Medical Center in New York City, it is hoped that many readers who are in a position to influence decisions and funding involving clinical services for children and young adults will use the SDHCC model to create similar programs in their communities. While all centers endeavor to provide excellent, state of the art medical care, sometimes sensibilities about environment in which services are provided can be left wanting.

Often, when dealing with life-threatening illnesses, so much emphasis is given to the medicine regimen or surgical interventions that resources are not provided psychosocial support. This can be due to lack of funding or the lack of priority given to non-essential infrastructure and services. In the case of the SDHCC, which treats children with cancers and blood disorders (including brain tumors, bone and soft tissue sarcomas, leukemia, vascular malformations and other diseases of the blood such as platelet and blood-clotting disorders), the reaction of patients, their families, and the staff strongly support the value of the comprehensiveness of services in one site and the emphasis of complementary interventions in improving the quality of life for these young patients. The staff is committed to providing compassionate care to both the physical and emotional needs of the pediatric patients and their families.

The SDHCC was named in memory of Stephen D. Hassenfeld, Chairman of Hasbro, Inc., the famous toy company. He was also founder of the Hasbro Children’s Foundation. The mission of the SDHCC is to provide the best possible research-driven care in a compassionate and respectful manner to all children in need regardless of financial ability.

Patients not only benefit from the results of nationally established protocols, but also have immediate access to original research pioneered by physicians in areas such as stem cell transplantation and interferon therapy.

Anyone, young or old, who has experienced a serious illness themselves or in a family member probably knows how frightening visits to the doctor, hospital, or laboratory can be. At its worst, the visits can be dehumanizing, as the patient sits in a waiting room reading old magazines, then goes into a windowless room for an examination or test. Most often one then needs to go to a separate lab for blood work. Typically, care and visits are not coordinated; patients and companions may be inconvenienced as visits may be spread out at several sites over several days. Apart from the uplifting decor and thoughtful use of space at the SDHCC, the various specialties utilize an integrated multi-disciplinary model to provide comprehensive and individualized care. A behavioral health team endeavors to facilitate normal development in spite of the serious illness and the impact of treatment as well as to enhance the patients’ and families’ ability to understand the illness and handle the many emotions that can accompany it.

As described at the center’s Web site:

 

Our psychiatrists, psychologists, social workers and child life specialists help children and family members recognize important and often confusing feelings that may be difficult to express. The team uses an array of specialty services including neuropsychological and educational evaluations for appropriate school placement; “medical play” to help children achieve a sense of mastery and control over their situation; creative arts therapies that allow for nonverbal expression of feelings; and individual and group counseling to teach coping strategies.1

The SDHCC has playroom space for play therapy activities, a video room for watching movies, and comfortable private room for treatments that take several hours. Having an on-site laboratory provides physicians with immediate results and streamlines appointment times.

This issue is not intended as a public relations piece for the SDHCC. Any conflict of interest I might have as editor of this journal is that I am affiliated with the NYU Langone Medical Center. I extend an invitation to our readers to submit information about other programs around the country that provide comprehensive medical care accounting for psychiatric, social, and cultural needs of patients and their families. We will consider it as the focus of a future issue of Primary Psychiatry. PP

 

Reference

1.    Stephen D. Hassenfeld Children’s Center for Cancer and Blood Disorders. Available at: www.med.nyu.edu/hassenfeld. Accessed June 12, 2008.

 

 

Ms. Nesbitt is music therapist and Ms. Tabatt-Haussmann is art therapist in the Pediatrics Department at New York University Langone Medical Center in New York City.

Disclosure: The authors report no affiliation with or financial interest in any organization that may pose a conflict of interest.

Please direct all correspondence to: Kim Tabatt-Haussmann, MA, ATR-BC, Stephen D. Hassenfeld Children’s Center for Cancer and Blood Disorders, 160 E 32nd St, Second Floor, New York, NY 10016; Tel: 212-263-9923; Fax: 212-263-8410; E-mail: kim.tabatt@nyumc.org.

 


 

Focus Points

• The use of the creative arts therapies in pain management is a successful non-pharmacologic intervention.
• The presence of music and art therapy provide a context of normalization for a child in a medical environment.

Abstract

The positive effects of art and music therapies for distraction during medical visits and procedures have been well studied. These interventions can reduce anxiety, promote relaxation, and minimize the perception of pain. This article describes combined art and music therapy interventions in the pediatric oncology/hematology environment and discusses various goals addressed during out-patient visits. Patient experiences are described as they relate to engagement in procedural accompaniments, creative arts therapy groups, individual therapy sessions, and group music therapy sessions. Interventions discussed include art making, active music listening, progressive muscle relaxation, music technology, active participation in music making, songwriting, and lyric analysis. The patients’ social, emotional, cognitive, and physical outcomes are discussed as they relate to treatment. In addition, the significance of the interventions for creative arts therapy practiced and researched is explored.

 

Introduction

For over 50 years, creative arts therapists have been used in hospital environments to facilitate relaxation, decrease anxiety, and provide distraction. During this time, extensive research documented in medical journals has proven that non-pharmacologic interventions such as art and music therapy have a positive impact on the patient’s quality of life.1-5

The following description offers insight into the interventions provided by the art and music therapists at an outpatient pediatric hematology/oncology clinic at New York University Langone Medical Center. Both therapists worked individually with patients and families and exercised their specific skills to achieve various goals, including facilitating relaxation, providing social and peer interaction, decreasing anxiety, and providing an environment to normalize the patient within the medical environment. In the past year both disciplines collaborated so that patients and their families could have more opportunities to actively participate in the creative arts. The outcome was extremely positive.

 

The Creative Arts Defined

Music therapy is the art of using music to address a non-musical goal. In pediatric medical settings, the music therapist particularly focuses on decreasing a patient’s anxiety and normalizing the hospital or clinical environment through music activities.1-5 A variety of interventions can be used to bring about relaxation, promote normalization, and provide distraction, including progressive muscle relaxation with music, music and imagery, hypnosis, procedural accompaniment, songwriting, lyric analysis, and music and movement.1-5

In a medical environment, the music therapist works with patients, families, and medical staff in the treatment room. During various procedures, the therapist engages the patient in live music and introduces relaxation skills, including self-hypnosis, progressive muscle relaxation, and music-assisted imagery, to distract the patient from pain and decrease anxiety. Music therapy establishes a “therapeutic environment that enhances the effects of medication and involves patients in activities that direct attention away from the stresses of illness.”3 Once patients focus less on the stress and anxiety of an illness, their perception of pain often abates. West4 relates that relaxation, a goal in music-therapy interventions, decreases muscle tension and anxiety and results in a “positive influence on pain perception, nausea, and other symptoms.”

Art therapy, with the creative process of art making, improves and enhances the physical, mental, and emotional well being of individuals of all ages. It is based on the belief that clinical intervention with the act of art making can heal patients and enhance their quality of life while helping to reduce stress, increase self awareness, and cope with difficult experiences.6-11

Medical art therapy is a term applied to “the use of art expression and imagery with individuals who are physically ill, experiencing trauma to the body, or who are undergoing aggressive medical treatment such as surgery or chemotherapy.”7 A study of the innovative use of art therapy in relieving symptoms in cancer provides beginning evidence for the efficacy of art therapy in reducing a broad spectrum of symptoms in cancer patients.8

“When art therapy is partnered with medical treatment, children can meet the challenges of serious illness. For instance, when children create art in the medical setting, they have a sense of the familiar that produces pleasurable and positive associations. The child artist gains control by mastering art materials and developing personal imagery in a situation that is often out of his/her control.”9

A study of art therapy as a support for children during painful procedures was shown to be a useful intervention that can prevent permanent trauma and support children and parents during intrusive interventions.10

In medical settings, when children are not well enough or are unable to visit the playroom for an art therapy group, individual art therapy sessions can be provided in the treatment room so as to normalize their clinic environment and provide opportunities for socialization and expression.

“One of the contributions of art therapy to cancer treatment is the possibility of helping young people emerge from their illness as emotionally whole and healthy as possible. Encouraging growth and development through art activities can help the ill child preserve many areas of normal functioning.”12

 

A Collaborative Approach: Art and Music Group at the Stephen D. Hassenfeld Children’s Center for Cancer and Blood Disorders

Art therapy and music therapy used collaboratively in a group provides the children and families with an outlet for stress management. In such an environment, they can sustain social and peer interactions as well as normalization. In addition, they have an opportunity to develop effective coping skills. Furthermore, art and music “therapists can address the functional skills of individual patients and encourage improved social skills, while providing the emotional outlet that is necessary for patients and families involved” in treatment for cancer and blood disorders.5 The art and music group takes place 1–2 times a week during clinic hours. Patients are invited to the Wellness Room, which is a large, open, non-threatening space with ceiling tiles designed as night-time stars. A large sheet of blank mural paper lies in the center of the room, and plush pillows and blankets are placed around the art area for the patients’ comfort. Children, parents, and siblings are assisted into the room, and markers, crayons, colored pencils, foam cutouts, and a variety of other art mediums are available. The music therapist sitting on a bench near the art area begins the session by introducing a theme, such as a trip to the zoo, life under the sea, space exploration, future dreams, or the patient’s view of him- or herself. The music therapist chooses appropriate music for the theme, and the art therapist asks the patients to close their eyes or focus on the song lyrics. After the music therapist sings and plays the first verse of the song, the art therapist invites the children to draw, color, or paint what or how the music made them feel. As the group progresses, different songs related to the theme are introduced. This technique facilitates diverse imagery evident by the distinctive pictures that appear on the mural paper. At the conclusion of the group, patients are asked to draw a final image reflecting the creative arts group theme. The result is a beautiful, unique mural designed by the participants that reflects their self-concept and emotions.

 

Benefits of Combining Art and Music Therapy

Combining art and music therapy at the Stephen D. Hassenfeld Children’s Center for Cancer and Blood Disorders (SDHCC) of New York University Langone Medical Center not only increases the participants’ creativity but also distracts them from the clinic environment. The interventions offered within the group “focus the attention away from the physical sensation of pain to other aspects of the person.”13 Pediatric-oncology patients are confronted with numerous challenging situations, as most of them have to undergo chemotherapy, radiation, and surgery. Because of their treatment, they are unable to experience a carefree childhood. Since patients often experience the side effects of treatment, including pain and nausea, non-pharmacologic treatments are extremely important in distracting them from the psychological aspects of pain. Music and art therapies actively involve patients in the creative process and, as a result, are able to draw attention “toward the art and music.”9 Therefore, “when an investment in the art or music occurs, an exchange of energy results, and energy is refocused [away] from the pain.”13 When music and art work together to enhance the creative process, the outcome is positive because it reveals decreased anxiety, distraction from pain, and increased relaxation response.

The music and art therapy group also provides children and families with an opportunity to develop a positive social support group. Not only do pediatric patients miss out on classroom activities with their teachers and peers when they are at a clinic, but they miss out on being with their friends and participating in community activities as well. However, with the combination of music and art in a social setting, children are able to socialize with peers in similar circumstances and not feel as isolated. In the creative arts group, patients have the opportunity to feel normal, make friends, work on art together, play and sing, learn, and, most importantly, have fun in a safe creative environment.

 

The Music and Art Group Defined

Patients visit the outpatient clinic with parents/guardians, siblings, grandparents, other relatives and friends. Because cancer affects the child’s family and network of support, the therapists encourage and invite caregivers to actively participate in the creative arts group. Focusing on family-centered care, the group aims to reduce anxiety and educate participants on effective coping skills and relaxation tools to increase understanding and support. For each caregiver present, the group work reinforces the idea that the child’s creativity, imagination, development, and spirit are maintained and validated throughout their treatment.

The Music and Art Group is a 45-minute session that takes place in a controlled and comfortable space with minimal design and distraction. The Wellness Room is separate from the playroom and waiting room, which helps participants focus on the music and art. Mural paper is placed in the middle of the floor as well as markers, crayons, foam shapes, and colored pencils. Pillows surround the paper, posing as comfortable seats for the participants.

The therapists decide on a theme for the group (eg, animals, beach activities, rainbows, water and outer space) that has vivid imagery related to it. After the music therapist collects appropriate song material, both therapists gather the patients to begin the group. The art therapist provides various materials and co-facilitates guiding participants in imagery before the art creating begins.

The group is encouraged to sit comfortably and participate in active listening, a music therapy intervention. As the music therapist performs the song, participants are asked to listen to the music, close their eyes, and imagine the pictures that come to mind from the song lyrics. Songs performed in the past to elicit vivid imagery include “Going to the Zoo,” “Under the Sea,” “Rocketship Run,” and “Puff the Magic Dragon” (Figures 1–4).

 

While the music therapist continues to perform a variety of theme-related songs, the patients and families, who often sing along, are encouraged by the art therapist to begin drawing images on the mural paper. While they are listening and singing, the art therapist helps the participants think about the song and images that come to mind. Working on one piece of mural paper, which is a metaphor for the group working together, encourages therapeutic play through image making. One initial image inspires another and gradually transforms the mural into storytelling through music and art.

While the group is creating images and listening to the music, individuals often talk about their drawings, and others sing and dance to the music. As they observe the dynamics of the group, the leaders reinforce the idea that there is no right or wrong method.

As the session ends, the therapists review the journey and discuss the images created on the mural paper, naming the particular songs that guided the patients’ imagination. Participants are encouraged to first discuss the images and music then choose a title for the group mural. All participants sign their names on the artwork, an act which increases their self-esteem, produces self-actualization, and provides positive reinforcement for their creative abilities. The group mural is then displayed in the playroom for the SDHCC’s staff, patients, and families. The participants take pride in their finished product, and as a result, more patients are encouraged to participate in the next creative arts group.

 

Conclusion

Art and music therapy used together is extremely effective, especially with pediatric oncology/hematology patients, because it helps them address the physical issues of pain as well as the emotional issues in a non-pharmacologic and non-threatening way. The dynamics of sound and its impact on physical symptoms should be understood. For example, when sound travels through the “reticular activating system of the brain stem [and] coordinates sensory input, it alerts the cortex to incoming information.”1 Therefore, when the brain is activated, the sound “competes for cognitive awareness” and causes pain and nausea to be ignored.1

Music therapy and its effect on anxiety and relaxation have been well documented in research and case studies over the years.2,5,13,14 Hanser2 reports decreased scores on the A-State Anxiety Inventory in the presence of induced anxiety when music is playing, whereas Trauger-Querry relates that music has a way to “engage, activate and alter affective, cognitive and sensory processes through distraction, alteration of mood, improved sense of control, the use of prior skills and relaxation.”2,13 Exercising these skills and establishing a normal environment where pediatric patients can play and have fun without thinking about their illness is of paramount importance.
Imagery, facilitated by the art and music therapist, is another layer that can be added to musical stimuli in diverting pain perception. A study in which progressive muscle relaxation and guided imagery was used to delay or prevent “chemotherapy-induced nausea and vomiting” with HIV patients was conducted, and the findings demonstrated that 24 hours after chemotherapy, the experimental group, having used guided imagery techniques, had decreased levels of nausea for up to 60 hours after treatment.15 As patients focus positively and reach new levels of awareness through music and art, their tension and anxiety decrease. PP

 

References

1.    Skaggs R. The Bonny Method of Guided Imagery and music in the treatment of terminal illness: a private practice setting. Music Therapy Perspectives. 1997;15(1):39-44.
2.    Hanser SB. Music therapy and stress reduction research. J Music Ther. 1985;22:193-206.
3.    Blom RC, Wylie ME. Guided imagery and music with hospice patients. Music Therapy Perspectives. 1986;3:25-28.
4.    West TM. Psychological issues in hospice music therapy. Music Therapy Perspectives. 1994;12(2):117-124.
5.    Barker VL, Brunk B. The role of a creative arts group in the treatment of clients with traumatic brain injury. Music Therapy Perspectives. 1991;9:26-31.
6.    Malchiodi C. Medical art therapy with children. London, UK: Jessica Kingsley Publishers; 1999.
7.    Malchiodi C. Introduction to special issue: art and medicine. Art Ther J Am Art Ther Assoc. 1993;10(2):66-69.
8.    Nainis N, Paice J, Ratner J, Wirth J, Lai J, Shott S.  Relieving symptoms in cancer: innovative use of art therapy. J Pain Symptoms Manage. 2006;31:162-169.
9.    Council T. Art Therapy with pediatric cancer patients: helping normal children cope with abnormal circumstances. Art Ther J Am Art Ther Assoc. 1993;10(2):78-87.
10.    Favara-Scacco C, Smirne G, Schilirò G, Di Cataldo A. Art therapy as support for children with leukemia during painful procedures. Med Pediatr Oncol. 2001;36(4):474-480.
11.    Walsh SM, Martin SC, Schmidt LA. Testing the efficacy of a creative arts intervention with family caregivers of patients with cancer. J Nurs Scolarsh. 2004;36(3):214-219.
12.    Council T. Art Therapy with pediatric cancer patients. In: Malchiodi C, ed. Medical Art Therapy with Children. 1st ed. New York, NY: Jessica Kingsley Publishers; 1999:91.
13.    Trauger-Querry B, Haghighi KR. Balancing the focus: art and music therapy for pain control and symptom management in hospice care. Hospice J. 1999;14(1):25-38.
14.    Logan T, Roberts A. The effects of different types of relaxation music on tension level. J Music Ther. 1984;21:177-183.
15.    Capeli B, Anastasi JK. A symptom review: nausea and vomiting in HIV. J Assoc Nurses AIDS Care. 1998;9(6):47-56.

 

Dr. Levenson is professor in the Departments of Psychiatry, Medicine, and Surgery, chair of the Division of Consultation-Liaison Psychiatry, and vice chair for clinical affairs in the Department of Psychiatry at Virginia Commonwealth University School of Medicine in Richmond.

Disclosure: Dr. Levenson reports no affiliation with or financial interest in any organization that may pose a conflict of interest.


 

This column begins a series reviewing the interface between dermatology and psychiatry. Dermatologists and primary care physicians frequently encounter important psychiatric issues affecting diagnosis and management of patients with dermatologic complaints. Psychiatrists contend with frequent pruritus and rashes in their patients. A study of psychiatric inpatients excluding those with known skin diseases found that 33% of patients reported itching.1 Psychological factors affect numerous dermatologic conditions including atopic dermatitis, psoriasis, alopecia areata, urticaria and angioedema, and acne vulgaris. Some dermatologic conditions are best considered as idiopathic functional disorders such as idiopathic pruritus, which can be generalized or focal (eg, pruritus ani, vulvae, scroti). Some primary psychiatric disorders present with primarily physical symptoms to dermatologists, including body dysmorphic disorder (BDD) and delusional disorder, somatic type (eg, delusions of parasitosis, delusions of a foul body odor). Indeed, most patients with delusions of parasitosis or BDD avoid visiting psychiatrists or other mental health professionals and resist referral. In addition, dermatologists see patients with compulsive behaviors that may be part of obsessive-compulsive disorder or stand alone (eg, trichotillomania, psychogenic excoriation, onychophagia). Factitious skin disorders include factitious dermatitis (ie, dermatitis artefacta) and psychogenic purpura. Another important aspect of the interface between psychiatry and dermatology is the range of dermatologic adverse reactions to psychotropic drugs. More detailed coverage of these topics can be found elsewhere.2,3 This part of the series focuses on atopic dermatitis and psoriasis.

 

Atopic Dermatitis

Atopic dermatitis (ie, atopic eczema) is a chronic skin disorder characterized by pruritus and inflammation (ie, eczema), starting as an erythematous, maculopapular rash. Scratching is hard to resist and leads to excoriation and secondary infection, resulting in lichenification. Atopic dermatitis is the most common inflammatory skin disease of childhood and remains fairly common in adults. It typically begins in children or adolescents with a personal or family history of atopic dermatitis, allergic rhinitis, or asthma. In most patients, atopic dermatitis is a recurrent, relapsing disorder, with a vicious cycle of itching and scratching that leads to chronicity.

 

Atopic Dermatitis and Stress

The onset or exacerbation of atopic dermatitis often follows stressful life events.4,5 Divorce or separation of parents and severe disease of a family member have been identified as particularly increasing risk.4 Adults with atopic dermatitis are more anxious and depressed compared with clinical and healthy control groups.6,7 Children with atopic dermatitis have higher levels of emotional distress and more behavioral problems than healthy children or children with minor skin problems.

 

Psychosocial Morbidity in Atopic Dermatitis

Atopic individuals with emotional problems may develop a vicious cycle between anxiety/depression and dermatologic symptoms. In one direction of causality, anxiety and depression are frequent consequences of the skin disorder. The misery of living with atopic dermatitis may have a profoundly negative effect on health-related quality of life (HRQOL) of children and their families. Intractable itching causes significant insomnia, and sleep deprivation leads to fatigue, mood lability, and impaired functioning. Teasing and bullying by children and embarrassment in adults and children can cause social isolation and school avoidance. The social stigma of a visible skin disease, frequent visits to doctors, and the need to constantly apply messy topical remedies all add to the burden of disease. Lifestyle restrictions in more severe cases can be significant, including limitations on clothing, staying with friends, owning pets, swimming, or playing sports. The impairment of quality of life caused by childhood atopic dermatitis has been shown to be greater than or equal to that of asthma or diabetes.8

In the other direction of causality, anxiety and depression aggravate atopic dermatitis. This may occur via several possible mechanisms, including modulation of pruritus perception,9 perturbation of epidermal permeability barrier homeostasis,10 or acceleration of immune responses.6

 

Psychiatric and Psychological Treatments for Atopic Dermatitis

A wide variety of treatments for atopic dermatitis have been advocated to interrupt the vicious cycle of itching and scratching. Mental health interventions include psychological, behavioral, and psychoeducational therapies and psychotropic medications. There have been several randomized controlled trials of psychological and educational interventions (eg, relaxation training, habit reversal training, cognitive-behavioral techniques, stress management training) as an adjunct to conventional therapy for children with atopic eczema to enhance the effectiveness of topical therapy, but the evidence base remains limited regarding their efficacy.11 Oral and topical doxepin have been used because its potent antihistaminic effects can reduce itching, and oral doxepin’s sedation can promote sleep. A systematic review of controlled trials12 of 47 different interventions concluded that there was reasonable evidence to support the use of oral cyclosporine, topical corticosteroids, psychological approaches, and ultraviolet light therapy. However, there was insufficient evidence to make recommendations regarding oral or topical antihistamines (eg, doxepin), maternal allergen avoidance for prevention, dietary restriction in established atopic dermatitis, hypnotherapy, and a variety of other orthodox and alternative medical interventions.

 

Psoriasis

Psoriasis is a chronic, relapsing disease with characteristic scaly lesions varying from pinpoint plaques to extensive skin involvement, nail dystrophy, and often arthritis. Psoriasis is an equally common condition among men and women, affecting 1.5% to 2% of the population in industrialized countries, with onset usually in the third decade of life. Most patients with psoriasis experience unpredictable exacerbations throughout life. The pathogenesis of psoriasis appears to involve genetic and environmental factors, influencing the body’s systems of skin repair, inflammatory defense mechanisms, and immunity.2,3

 

Psoriasis and Lithium

A particular concern for psychiatrists is lithium-induced psoriasis, which typically occurs within the first few years of treatment. Male patients taking lithium appear to be more susceptible to developing cutaneous reactions to lithium than females. Even a very small amount of psoriasis can be distressing to patients and can undermine medication compliance. Lithium-induced psoriasis is sometimes resistant to psoriatic treatments but resolves after discontinuation of lithium.13 There have also been case reports of psoriasis precipitated or aggravated by olanzapine.14,15

 

Psychosocial Morbidity in Psoriasis

Psoriasis is associated with a variety of psychological difficulties, including poor self-esteem, sexual dysfunction, anxiety, depression, and suicidal ideation. Psoriasis is associated with substantial impairment of HRQOL, negatively impacting psychological, vocational, social, and physical functioning.16 Not surprisingly, appearance-related concerns dominate the experiences of young people with psoriasis.17 A theme running through the psoriasis literature is conveyed in the conclusion from a systematic review of psychosocial burden of psoriasis: “Social stigmatization, high stress levels, physical limitations, depression, employment problems and other psychosocial co-morbidities experienced by patients with psoriasis are not always proportional to, or predicted by, other measurements of disease severity such as body surface area involvement or plaque severity.”18

A recent cross-sectional study19 of 265 adults with prevalent psoriasis found that 32% of subjects screened positive for depression, with a graded relationship between depressive symptoms and impairment of HRQOL. Only 16.5% of those with high depression scores were receiving treatment for the condition. Depression was highly associated with both illness-related stress and dissatisfaction with antipsoriatic treatment. It was not associated with objective measures of psoriasis severity.19 A survey of 2,391 Italian adults with psoriasis using the Center for Epidemiological Studies-Depression Scale questionnaire found 62% of patients presenting depressive symptomatology. There was no difference in gender; however, younger men were more likely to report depressive symptoms than older men as were all subjects with less education.20

The emotional effects and functional impact of the disease are not necessarily proportionate to the clinical severity of psoriasis.21 In general, psychological factors, including perceived health, perceptions of stigmatization, and depression, are stronger determinants of disability in patients with psoriasis than are disease severity, location, and duration.22 It is not surprising that perceived stress in patients with psoriasis as well as numerous chronic diseases predicts poorer quality of life.23

Studies of the relationship between psychological factors and psoriatic disease severity have been primarily focused on depression. Some investigators found the condition correlated with objective measures of psoriasis severity24 and others have not.19 In a large double-blind, placebo-controlled trial of etanercept,25 which is an effective treatment for the clinical symptoms of psoriasis, patients who received etanercept had significant improvement in both fatigue and depressive sympomatology. Improvement in fatigue was correlated with decreasing joint pain, but improvement in depressive symptomatology was less correlated with objective measures of skin clearance or joint pain.

In a recent prospective study of patients with psoriasis,26 the frequency of psychiatric disturbance decreased with improvement in the clinical severity and symptoms of psoriasis. Other predictors of psychiatric improvement included no psoriatic involvement on the face and sex (ie, women were less likely to improve psychologically). However, the authors concluded that “dermatologists should be aware that even in the presence of vast clinical improvement patients may still substantially suffer psychologically.”26

Psoriasis and Suicide

In addition to the effects of depression on possibly triggering psoriasis and certainly reducing disease-related quality of life, suicide is a concern. One study found that 10% of adults with psoriasis reported suicidal ideation during the previous 2 weeks.27 Gupta and Gupta28 reported suicidal ideation in 2.5% of psoriasis outpatients and 7.2% of inpatients. In an earlier study of a different sample, Gupta and colleagues29 found that 9.7% of patients with psoriasis reported a wish to be dead, and 5.5% reported active suicidal ideation at the time of study. Death wishes and suicidal ideation were associated with higher depression scores and higher patient self-ratings of psoriasis severity.

 

Psoriasis and Stress

Stress has long been reported to trigger psoriasis.2,3 Uncontrolled studies have reported very high rates of stressful life events preceding the onset of the illness (eg, 68% of adult patients in one study,24 and 50% of children and 43% of adults in another).30 However, perception and recall biases influence such rates. A cross-sectional study23 of 141 adults found that approximately 66% strongly believed that stress was a causal factor for their psoriasis. This belief was significantly associated with higher levels of anxiety, depressive symptomatology, and perceived stress, but there was no association between perceived stress objective measures of psoriasis severity. A large case-control study31 comparing 560 patients with psoriasis to 690 patients with a new diagnosis of skin disease other than psoriasis found a high index of stressful life events associated with patients having more than double the risk of psoriasis compared to low scorers. However, the same study found that current and ex-smokers had approximately double the risk of psoriasis. Not all studies have supported the widely held belief that stressful life events precipitate psoriasis. For example, an investigation32 of outpatients experiencing a recent onset or exacerbation of psoriasis found no difference when comparing them to outpatients with skin conditions in which psychosomatic factors are regarded as negligible. Ultimately, however, most patients who report episodes of psoriasis precipitated by stress describe disease-related stress, resulting from the cosmetic disfigurement and social stigma of psoriasis, rather than stressful major life events or nonspecific distress.2,3

In an experimental study, 40 patients with chronic plaque psoriasis and 40 age-matched normal controls were subjected to acute psychological stressors (ie, cognitive, emotional, social). Patients with psoriasis and, in particular, those who believed that their psoriasis was highly stress responsive, were found to exhibit altered hypothalamic-pituitary-adrenal response to acute social stress, specifically lower post-stressor cortisol levels. The implication is that such patients may perhaps be more vulnerable to flares of their psoriasis.33 The mechanism of stress-induced exacerbations of psoriasis has been speculated to involve the nervous, endocrine, and immune systems, but no definitive pathways have been established. A more direct connection may be the effects of anxiety or depressive symptoms in reducing the threshold for pruritus in psoriatic patients.34

The adverse psychological sequelae of psoriasis are often but not always reduced by effective treatment of the disease, as noted in the study of disease-modifying therapy with etanercept cited earlier.25 A study16 that focused on systematic topical treatment for psoriasis found general quality of life significantly improved following treatment. Body image and appearance, self-esteem, and negative feelings were particularly responsive to clinical change. Domains of spirituality, independence and physical health also improved.

 

Psychiatric and Psychological Treatments for Psoriasis

There have been case reports of dramatic improvement in psoriasis after anxiolytic drug treatment but no controlled studies. The use of psychological therapies for patients with psoriasis has been proposed based on observations that the severity of their disease may correlate with emotional stress. Meditation, hypnosis, relaxation training, cognitive-behavioral stress management, and symptom control imagery training have received support in controlled trials for their effectiveness in reducing psoriasis activity,2,3 but this evidence base is limited by the size and short duration of the studies. A small (n=51) randomized controlled trial35 of a psychological intervention that entailed seven sessions of individual psychotherapy, including stress management, guided imagery, and relaxation, found some evidence of modest benefit on psoriasis activity.

A small (n=40) nonrandomized, age- and sex-matched case-controlled psychological intervention trial36 investigating the effects of a cognitive-behavioral psoriasis symptom management program showed significant reductions in illness identity (ie, the frequency and severity of symptoms that patients associate with their condition), the strength of belief in severity of consequences of their illness, and patients’ attributions for emotional causes of their psoriasis. PP

 

References

1. Mazeh D, Melamed Y, Cholostoy A, Aharonovitzch V, Weizman A, Yosipovitch G. Itching in the psychiatric ward. Acta Derm Venereol. 2008;88(2):128-131.
2. Arnold L. Dermatology. In: Levenson JL, ed. The American Psychiatric Publishing Textbook of Psychosomatic Medicine. 1st ed. Washington, DC: American Psychiatric Publishing; 2005:629-646.
3. Arnold L. Dermatology. In: Levenson JL, ed. Essentials of Psychosomatic Medicine. 1st ed. Washington, DC: American Psychiatric Publishing; 2007:237-260.
4. Bockelbrink A, Heinrich J, Schäfer I, et al. Atopic eczema in children: another harmful sequel of divorce. Allergy. 2006;61(12):1397-1402.
5. Picardi A, Abeni D. Stressful life events and skin diseases: disentangling evidence from myth. Psychother Psychosom. 2001;70(3):118-136.
6. Hashizume H, Horibe T, Ohshima A, Ito T, Yagi H, Takigawa M. Anxiety accelerates T-helper 2-tilted immune responses in patients with atopic dermatitis. Br J Dermatol. 2005;152(6):1161-1164.
7. Gupta MA, Gupta AK. Psychiatric and psychological co-morbidity in patients with dermatologic disorders. Am J Clin Dermatol. 2003;4(12):833-842.
8. Lewis-Jones S. Quality of life and childhood atopic dermatitis: the misery of living with childhood eczema. Int J Clin Pract. 2006;60(8):984-992.
9. Gupta MA, Gupta AK. Depression modulates pruritus perception. A study of pruritus in psoriasis, atopic dermatitis and chronic idiopathic urticaria. Ann N Y Acad Sci. 1999;885:394-395.
10. Garg A, Chren MM, Sands LP, et al. Psychological stress perturbs epidermal permeability barrier homeostasis: implications for the pathogenesis of stress-associated skin disorders. Arch Dermatol. 2001;137(1):53-59.
11. Ersser SJ, Latter S, Sibley A, Satherley PA, Welbourne S. Psychological and educational interventions for atopic eczema in children. Cochrane Database Syst Rev. 2007;(3):CD004054.
12. Hoare C, Li Wan Po A, Williams H. Systematic review of treatments for atopic eczema. Health Technol Assess. 2000;4(37):1-191.
13. Yeung CK, Chan HH. Cutaneous adverse effects of lithium: epidemiology and management. Am J Clin Dermatol. 2004;5(1):3-8.
14. Latini A, Carducci M. Psoriasis during therapy with olanzapine. Eur J Dermatol. 2003;13(4):404-405.
15. Ascari-Raccagni A, Baldari U, Rossi E, Alessandrini F. Exacerbation of chronic large plaque psoriasis associated with olanzapine therapy. J Eur Acad Dermatol Venereol. 2000;14(4):315-316.
16. Skevington SM, Bradshaw J, Hepplewhite A, Dawkes K, Lovell CR. How does psoriasis affect quality of life? Assessing an Ingram-regimen outpatient programme and validating the WHOQOL-100. Br J Dermatol. 2006;154(4):680-691.
17. Fox FE, Rumsey N, Morris M.”Ur skin is the thing that everyone sees and you cant change it!”: exploring the appearance-related concerns of young people with psoriasis. Dev Neurorehabil. 2007;10(2):133-141.
18. Kimball AB, Jacobson C, Weiss S, Vreeland MG, Wu Y. The psychosocial burden of psoriasis. Am J Clin Dermatol. 2005;6(6):383-392.
19. Schmitt JM, Ford DE. Role of depression in quality of life for patients with psoriasis. Dermatology. 2007;215(1):17-27.
20. Esposito M, Saraceno R, Giunta A, Maccarone M, Chimenti S. An Italian study on psoriasis and depression. Dermatology. 2006;212(2):123-127.
21. Russo PA, Ilchef R, Cooper AJ. Psychiatric morbidity in psoriasis: a review. Australas J Dermatol. 2004;45(3):155-159.
22. Richards HL, Fortune DG, Griffiths CE, Main CJ. The contribution of perceptions of stigmatisation to disability in patients with psoriasis. J Psychsom Res. 2001;50(1):11-15.
23. O’Leary CJ, Creamer D, Higgins E, Weinman J. Perceived stress, stress attributions and psychological distress in psoriasis. J Psychosom Res. 2004;57(5):465-471.
24. Devrimci-Ozguven H, Kundakci TN, Kumbasar H, Boyvat A. The depression, anxiety, life satisfaction and affective expression levels in psoriasis patients. J Eur Acad Dermatol Venereol. 2000;14(4):267-271.
25. Tyring S, Gottlieb A, Papp K, et al. Etanercept and clinical outcomes, fatigue, and depression in psoriasis: double-blind placebo-controlled randomised phase III trial. Lancet. 2006;367(9504):29-35.
26. Sampogna F, Tabolli S, Abeni D. The impact of changes in clinical severity on psychiatric morbidity in patients with psoriasis: a follow-up study. Br J Dermatol. 2007;157(3):508-513.
27. Picardi A, Mazzotti E, Pasquini P. Prevalence and correlates of suicidal ideation among patients with skin disease. J Am Acad Dermatol. 2006;54(3):420-426.
28. Gupta MA, Gupta AK. Depression and suicidal ideation in dermatology patients with acne, alopecia areata, atopic dermatitis and psoriasis. Br J Dermatol. 1998;139(5):846-850.
29. Gupta MA, Schork NJ, Gupta AK, Kirkby S, Ellis CN. Suicidal ideation in psoriasis. Int J Dermatol. 1993;32(3):188-190.
30. Raychaudhuri SP, Gross J. A comparative study of pediatric onset psoriasis with adult onset psoriasis. Pediatr Dermatol. 2000;17(3):174-178.
31. Naldi L, Chatenoud L, Linder D, et al. Cigarette smoking, body mass index, and stressful life events as risk factors for psoriasis: results from an Italian case-control study. J Invest Dermatol. 2005;125(1):61-67.
32. Picardi A, Pasquini P, Cattaruzza MS, et al. Only limited support for a role of psychosomatic factors in psoriasis. Results from a case-control study. J Psychosom Res. 2003;55(3):189-196.
33. Richards HL, Ray DW, Kirby B, et al. Response of the hypothalamic-pituitary-adrenal axis to psychological stress in patients with psoriasis. Br J Dermatol. 2005;153(6):1114-1120.
34. Gupta MA, Gupta AK, Schork NJ, Ellis CN. Depression modulates pruritus perception: a study of pruritus in psoriasis, atopic dermatitis, and chronic idiopathic urticaria. Psychosom Med. 1994;56(1):36-40.
35. Zachariae R, Oster H, Bjerring P, Kragballe K. Effects of psychologic intervention on psoriasis: a preliminary report. J Am Acad Dermatol. 1996;34(6):1008-1015.
36. Fortune DG, Richards HL, Griffiths CE, Main CJ. Targeting cognitive-behaviour therapy to patients’ implicit model of psoriasis: results from a patient preference controlled trial. Br J Clin Psychol. 2004;43(Pt 1):65-82.

 

Needs Assessment: Psychosocial interventions that address the needs of the whole person have been shown to provide unique benefits to both patients and their families. This is especially relevant and challenging when treating pediatric patients having particular needs. Horticultural therapy is being increasingly offered as a psychosocial intervention designed to meet a variety of needs for many patient groups.

Learning Objectives:
• Understand the history and uses of horticultural therapy.
• Understand horticultural therapy as a psychosocial intervention.
• Understand the importance of developmentally appropriate interventions for pediatric hematology/oncology patients.

Target Audience: Primary care physicians and psychiatrists.

CME Accreditation Statement: This activity has been planned and implemented in accordance with the Essentials and Standards of the Accreditation Council for Continuing Medical Education (ACCME) through the joint sponsorship of the Mount Sinai School of Medicine and MBL Communications, Inc. The Mount Sinai School of Medicine is accredited by the ACCME to provide continuing medical education for physicians.

Credit Designation: The Mount Sinai School of Medicine designates this educational activity for a maximum of 3 AMA PRA Category 1 Credit(s)TM. Physicians should only claim credit commensurate with the extent of their participation in the activity.

Faculty Disclosure Policy Statement: It is the policy of the Mount Sinai School of Medicine to ensure objectivity, balance, independence, transparency, and scientific rigor in all CME-sponsored educational activities. All faculty participating in the planning or implementation of a sponsored activity are expected to disclose to the audience any relevant financial relationships and to assist in resolving any conflict of interest that may arise from the relationship. Presenters must also make a meaningful disclosure to the audience of their discussions of unlabeled or unapproved drugs or devices. This information will be available as part of the course material.

This activity has been peer-reviewed and approved by Eric Hollander, MD, chair and professor of psychiatry at the Mount Sinai School of Medicine, and Norman Sussman, MD, editor of Primary Psychiatry and professor of psychiatry at New York University School of Medicine. Review Date: June 4, 2008.

Drs. Hollander and Sussman report no affiliation with or financial interest in any organization that may pose a conflict of interest.

To receive credit for this activity: Read this article and the two CME-designated accompanying articles, reflect on the information presented, and then complete the CME posttest and evaluation. To obtain credits, you should score 70% or better. Early submission of this posttest is encouraged: please submit this posttest by July 1, 2010 to be eligible for credit. Release date: July 1, 2008. Termination date: July 31, 2010. The estimated time to complete all three articles and the posttest is 3 hours.

Primary Psychiatry. 2008;15(7):73-77

 

Ms. Fried is horticultural therapist and Mr. Wichrowski is senior horticultural therapist in the OT/PT Department at the Glass Garden, Rusk Institute at New York University Langone Medical Center in New York City.

Disclosure: The authors report no affiliation with or financial interest in any organization that may pose a conflict of interest.
Please direct all correspondence to: Matthew J. Wichrowski, MSW, HTR, Glass Garden, Rusk Institute, NYUMC, 400 E 34th St, New York, NY 10016; Tel: 212-263-6058; Fax: 212-263-2091; E-mail: matthew.wichrowski@nyumc.org.

 


 

 

Abstract

Quality psychosocial care for patients undergoing treatment for hematology/oncology disorders and their families serves to reduce the inevitable disruptions in life experienced during treatment. Horticultural therapy, a process through which plants and gardening activities are used as vehicles in professionally conducted programs of therapy, is a program option that can address the psychosocial needs of patients in numerous medical situations. The horticultural therapy program at the Stephen D. Hassenfeld Children’s Center for Cancer and Blood Disorders of New York University Langone Medical Center is designed to stimulate sensory, cognitive, and communication skills as well as increase knowledge and awareness of nature while providing a stress-reducing diversion during treatment. This program provides a range of benefits that complement other treatment options and serves to help minimize potential challenges in the quality of life for patients and their families.

 

Introduction

Current trends in care for patients undergoing treatment for hematology/oncology issues increasingly include programs that address psychosocial needs as part of the treatment regimen.1-3 Various psychosocial interventions have shown potential to help normalize the treatment process,1 decrease the stigma of treatment,4 and help reduce the negative impact of the condition.3 These treatment issues are especially important when the patient is a child or adolescent. Their developmental stages and needs create extra challenges in ensuring positive outcomes.5 Through well-defined psychosocial practices, children and families are better prepared to cope with cancer and become well-adjusted survivors.3 Horticultural therapy is increasingly offered as a program component providing an array of psychosocial benefits for many groups of patients.

Biophilia is described as our predisposition to react positively to natural settings that suggest safety and shelter; offer hope for sources of food, medicine, and tools; and provide aesthetic enjoyment.6 Nature has been utilized as a therapeutic aid for thousands of years. Egyptian court physicians prescribed taking walks in the palace gardens for mentally disturbed members of royalty. Benjamin Rush, MD, founder of Friends Hospital, observed that field labor in a farm setting had a curative effect on patients. After World War I, horticultural activities were used with veterans during their occupational therapy sessions at Menninger’s Clinic.7

Today, horticultural therapy is the process through which plants and gardening are used as vehicles in professionally conducted programs of therapy.7 Horticultural therapy is used with individuals of all ages in a wide variety of applications including work in mental health,8 with people who have developmental disabilities,9 in educational settings,9,10 and in diverse healthcare settings.11-14

Although there is only a modest number of studies describing the clinical effects of horticultural therapy, an increasing body of literature supports the benefits of both passive and active interaction with nature. Ulrich15 reported decreased use of narcotic analgesics when compared to acetaminophen and a slightly shortened length of stay when cholecystectomy patients had a view of a landscaped area compared to patients who had a view of an adjacent building. In other studies, changes in physiologic indicators corresponding with stress reduction, including lowered heart rate,15,16 have been reported. Likewise, cognitive restoration in newly diagnosed breast cancer patients17 and enhanced mood in cardiac rehabilitation patients16 have been documented.

In practice, horticultural therapy provides a wide range of benefits in physical, emotional cognitive and social domains. Gardening is a popular avocational activity, exercising fine and gross motor skills, range of motion, strength maintenance, and endurance.18 Emotional benefits include enhanced self-esteem and mood.16,19 Learning about plants provides cognitive stimulation, as it exercises sequencing memory, and work with plants helps reduce stress.20 In addition, a wide range of social benefits can be achieved by a skilled therapist such as instillation of hope, universality, and imparting information.21

 

Program Description

The Glass Garden at Rusk Institute is the home base for the horticulture program at the Stephen D. Hassenfeld Children’s Center for Cancer and Blood Disorders (SDHCC). Since its inception in 1959, the Glass Garden has provided a tranquil respite for patients, families, visitors, and staff of the SDHCC.
Initially, the conservatory was maintained as an amenity for the patients to visit and enjoy. However, the patients wanted more than just a visit; they wanted to work with the plants while they were there. This desire, coupled with the birth of the field of clinical horticultural therapy in the early 1970s, changed the role of the Glass Garden and the Glass Garden staff. Once merely a place for passive enjoyment of nature, the garden, which is now staffed with professional horticultural therapists, became a hub for helping, healing, and empowerment.

Today, the Glass Garden is far more than the original conservatory. When the current director, Nancy Chambers, came on board in 1986 she embraced a mission to develop the garden and its programs to reach far beyond the four glass walls of the original building. Her vision has seen the addition of a fully accessible perennial garden and an award-winning, state of the art, children’s PlayGarden that is regarded as a model to replicate in healthcare garden design.

Programming at the Glass Garden has also taken on new dimensions. In addition to four 1-hour intergenerational groups per day for inpatients at Rusk Institute, the staff runs horticulture programs in the Rusk Pre-school, Tisch Hospital Pediatric Child-Life Program, Psychiatric Unit, Cardiac Rehabilitation Unit, and Epilepsy Unit. The garden hosts programs for schools, senior centers, aphasia community groups, Alzheimer’s and dementia support groups, psychiatric day programs, adult day care, and nursing homes.

One of the most requested services at the Glass Garden is a staff therapist to conduct regularly scheduled horticulture groups at an off-site location. One such program at a senior center has been running for >6 years.

This is the kind of program that is currently running at the SDHCC. In 2006, the Glass Garden’s horticultural therapy team began a pilot program at the center’s New York City location. The team at the SDHCC was committed to adding this component to their innovative treatment milieu so they worked around the limited space and other logistical issues to fit the nature-based activity group into the weekly program. The new location at the upgraded space has really helped develop a vigorous program.

 

Procedure

Each week, the horticultural therapist brings a plant or group of similarly themed plants to the center. The participants will plant them using the pots, sterile potting mix, plant labels, saucers, and anything else needed for the project. The Child-Life staff recruits medically cleared patients, their parents, siblings, care givers, and other staff members interested in participating. Class begins with participants’ introductions followed by an overview of the plant or project presented. Country of origin, history, culture, folklore as well as culinary and medicinal uses are topics available for discussion. The group’s theme can center on holidays, seasons, weather, geography, or other science topics. Each class may be different depending on the experiences, interests, and needs of its members. The leader demonstrates the project. Then, each group member completes his or her plant or project to take home.

Care is taken to provide numerous opportunities for decision making. For example, participants may choose which plant they want, how many cuttings they want to take, and what size pot is needed. The participants label the finished project with their name, name of the plant, and date. At the end of the class, participants talk about where they are going to keep their plant when they return home and review how to take care of it. The leader often asks how participants liked the class, but by this time the members are often involved in casual conversation about home, hobbies, and other normal activities.

 

Program Goals

The first goal of the program is to provide respite for the children and their family members while they receive treatment at SDHCC. Many of the center’s patients are from countries other than the United States. Because most houseplants are from tropical or subtropical countries, the plant is often recognized as something from their home country. This often leads to sharing nostalgic stories about home, family, and friends. The child or parent may even assume the role of teacher, telling other members of the group how the plant is used in their homeland. A once overwhelmed caregiver has transformed into a teacher, sharing knowledge and information while experiencing a sense of empowerment that reaches far beyond the class.

The second goal of the program is to offer hands-on experiences with nature to stimulate sensory, cognitive, and communication skills. Numerous families at the center are there for outpatient treatment after an admission to an acute care hospital. Coming from a setting where gowns and gloves are the norm, they are often apprehensive toward touching anything in the “outside world.” With the center’s safe environment, families are reintroduced to these tactile and sensory experiences while being educated on safe ways to handle soil and plant material when they are at home (Figure 1). As the educational conversation and the planting continue, members tend to let down their guard. The colors, smells, and textures of nature begin to take over. The experience becomes such a total sensory immersion that is so different from the clinical environment that members report momentarily forgetting where they are and why they are together (Figure 2).

 

 

 

A third goal is to introduce horticulture projects that increase knowledge of nature, science, nutrition, and environmental concepts. Each program is designed to be well rounded and rich in content. One class on planting ginger began with a challenge to the group members to see if anyone could recognize the root on the table. Clues of ginger ale and gingersnaps helped those who had trouble. At this point group members may discuss ginger roots in India, how the plant is produced or used in recipes, or medicinal uses from days gone by. Someone usually remembers a parent or grandparent giving him or her ginger ale as a remedy for nausea. If they ask, patients are encouraged to check with their doctor to see if they can use ginger tea or ginger ale as a remedy for the side effects of treatment (Table).

 

 

Positive Themes Cultivated in Horticultural Therapy Groups

 One of the favorite groups for children and adults alike is the ketchup class. Tomatoes and other ingredients are put together to make tomato ketchup. The product tastes just like the condiment that they know and love. Many participants are surprised to see what is in ketchup and they can easily create fresh ketchup at home without any chemical additives. In addition, they discuss how they can adjust this recipe to make a more sophisticated version custom flavored to their taste preferences.

Another positive theme occurs when planting a seed, root, or seedling comes with an expectation of change and growth. This implies hope for the future. As the participants complete the planting project they talk about what to expect as the plant grows. Comments like, “when that has roots, we will be done with these treatments” or “this plant will be 6 inches tall by your birthday” convey hope and allow the patient to recognize hope in the voices of a caregiver, parent, or child. Hope can be a powerful psychological factor in cancer treatments influencing prognosis and quality of life (Figure 3).21

 

One of the benefits of the program was not initially intended. The scope of programs at the Glass Garden touches all areas of the hospital and that means very often the therapist sees patients or their families in acute care, rehabilitation, and outpatient care at the SDHCC. It is very comforting for the patients to see a familiar face when they enter another phase of their treatment. Comments like, “I guess you are one big family,” tell us that this is very settling for patients and their families to have familiarity from place to place on their journey.

 

Conclusion

While the goals of the horticultural therapy option mesh well with the overall goals of the SDHCC in meeting the needs of patients and their families, there is limited empirical support for this relatively new treatment modality. More research is needed to document the benefits of horticultural therapy. Researching psychosocial interventions presents an array of methodologic challenges, particularly when team treatment approaches are used. Evaluating the effects of horticultural therapy on mood, stress, and distraction from discomfort during treatment, as well as on quality of life and overall satisfaction with treatment, would be helpful in determining the range of benefits that horticultural therapy programming provides and in what settings it is most effective.

Overall, horticultural therapy provides a treatment option addressing numerous needs for patients and their families at the SDHCC. Offering a variety of psychosocial interventions as part of the treatment team respects individual preferences and offers choice and some sense of control while battling a serious illness. Optimal cancer care balances the need for scientific knowledge, statistical analysis, and rational thought with the need for wisdom, kindness, compassion, and love.2 Integrated treatment that provides a diversity of options aimed at maximizing treatment effectiveness and minimizing potential complications while enhancing quality of life helps fight disease and promotes well being for all dimensions of a person. A treatment philosophy that honors the complexities of the human condition is a key feature in developing optimal healing environments in cancer care. PP

 

References

1.    Kusch M, Labouvie H, Fleisback G, Bode U. Structuring psychosocial care in pediatric oncology. Patient Educ Couns. 2000;40(3):231-245.
2.    Geffen JR. Creating optimal healing environments for cancer patients and their families: insights, challenges, and lessons learned from a decade of experience. J Altern Complement Med. 2004;10(suppl 1):S93-S102.
3.    Zeitzer L. Cancer in adolescents and young adults: psychosocial aspects. Cancer Suppl. 1993;71(10):3863-3868.
4.    Ritchie MA. Sources of emotional support for adolescents with cancer. J Pediatr Oncol Nurs. 1993;18(3):105-110.
5.    Redd WH. Advances in psychosocial oncology in pediatrics. Cancer Suppl. 1993;74(4):1496-1502.
6.    Kellert SR, Wilson EO. The Biophilia Hypothesis. Washington, DC: Island Press; 1993.
7.    Davis S. Development of the profession of horticultural therapy. In: Simpson SP, Strauss MC, eds. Horticulture as Therapy. Binghamton, NY: Haworth Press; 1998:3-18.
8.    Shapiro BA, Kaplan MJ. Mental illness and horticultural therapy practice. In: Simpson SP, Strauss MC, eds. Horticulture as Therapy. Binghamton, NY: Haworth Press; 1998:157-197.
9.    Catlin P. Developmental disabilities and horticultural therapy practice. In: Simpson SP, Strauss MC, eds. Horticulture as Therapy. Binghamton, NY: Haworth Press; 1998:131-156.
10. Morris JL, Zidenberg-Cherr S. Garden-enhanced nutrition curriculum improves fourth-grade school children’s knowledge of nutrition and preferences for some vegetables. J Am Diet Assoc. 2002;102:91-93.
11.    Frazel M. Botanical gardening: design, techniques, and tools. In: Simpson SP, Strauss MC, eds. Horticulture as Therapy. Binghamton, NY: Haworth Press; 1998:355-375.
12.    Wichrowski M, Chambers NK, Ciccantelli L. Stroke, spinal cord, and physical disabilities and horticultural therapy practice. In: Simpson SP, Strauss MC, eds. Horticulture as Therapy. Binghamton, NY: Haworth Press; 1998:71-104.
13.    Strauss D, Gabaldo M. Traumatic brain injury and horticultural therapy practice. In: Simpson SP, Strauss MC, eds. Horticulture as Therapy. Binghamton, NY: Haworth Press; 1998:105-130.
14.    Haas K, Simpson SP, Stevenson, NC. Older persons and horticultural therapy practice. In: Simpson SP, Strauss MC, eds. Horticulture as Therapy. Binghamton, NY: Haworth Press; 1998:231-256.
15.    Ulrich RS. View through a window may influence recovery from surgery. Science. 1984;224(4647):420-421.
16.    Wichrowski M, Whiteson J, Haas F, Mola A, Rey MJ. Effects of horticultural therapy on mood and heart rate in patients participating in an inpatient cardiopulmonary rehabilitation program. J Cardiopulm Rehabil. 2005;25(5):270-274.
17.    Cimprich B. Development of an intervention to restore attention to cancer patients. Cancer Nurs. 1993;16(2):83-92.
18.    Lantz B. Therapeutic gardening with physical rehabilitation patients. Journal of Therapeutic Horticulture. 2006;17:35-38.
19.    Szofram J, Meyer S. Horticultural therapy in a mental health day program. Journal of Therapeutic Horticulture. 2004;15:32-35.
20.    Taft S. Therapeutic horticulture for people living with cancer: the healing gardens program at cancer lifeline in Seattle. Journal of Therapeutic Horticulture. 2004;15:16-23.
21.    Yalom ID. The Theory and Practice of Group Psychotherapy. New York, NY: Basic Books; 1995.
22.    Spiegel B. Love Medicine and Miracles. New York, NY: Harper Row; 1988.

 

Ms. Anglin is the family health librarian at the Stephen D. Hassenfeld Children’s Center for Cancer and Blood Disorders in New York City.

Disclosures: Ms. Anglin reports no affiliation with or financial interest in any organization that may pose a conflict of interest.
Please direct all correspondence to: Carlita Anglin, MSInfoStds, Family Health Librarian, Stephen D. Hassenfeld Children’s Center for Cancer and Blood Disorders, Family Health Resource Center & Library, NYU Health Sciences Consumer Library, 160 E 32nd St, Medical Level, New York, NY 10016; Tel: 212-263-9958; Fax: 212-263-8410; E-mail: anglin@library.med.nyu.edu; Website: www.nyumc.org/hassenfeld.

 


 

 

Focus Points

• Consumer health information services in a pediatric hematology/oncology clinic provide an enriched psychosocial experience for patients and family members.
• A medical librarian can serve a vital role on a patient’s interdisciplinary care team.
• Patients and family members who are better informed about their diagnosis and treatment plan are more engaged in their own health care.
• An interdisciplinary pediatric hematology/oncology care team can work together to reduce patient information barriers and facilitate improved health literacy.

 

Abstract

A family health librarian and pediatric patient library can serve an important role as an interdisciplinary service line within a pediatric hematology/oncology outpatient clinic. Patients and families are offered an enhanced psychosocial experience during their clinic visit through patient library resources, programs, and services. As one aspect of integrated psychosocial support to patients and families, the patient library’s role in addressing issues in health literacy, patient education, consumers’ information styles, bibliotherapy, education and school readiness, online access to health information, and collection materials are described and discussed. The success of the Family Health Resource Center and Library at the Stephen D. Hassenfeld Children’s Center for Cancer and Blood Disorders of New York University Langone Medical Center in New York City is owed largely to its integration within numerous psychosocial programs, an overall approach to holistic patient care within the clinic, and a personalized patient experience.

 

Introduction

The primary mission of the Family Health Resource Center and Library at the Stephen D. Hassenfeld Children’s Center for Cancer and Blood Disorders (SDHCC) in New York City is to provide consumer health information that allows family members, patients, and others who care about them to understand their health condition and treatment path, be engaged in their own health care, and be informed during critical and difficult decision-making processes. The library is staffed by a professional librarian who provides services and programs that address issues in health literacy, patient education, educational enrichment, school readiness, research support, and psychosocial programming. This integrated service line contributes to the clinic’s emphasis on wellness and patient-centered care.

 

Background

SDHCC’s Family Health Resource Center and Library opened in the fall of 2006 through a generous start-up grant from the Citigroup Foundation. In the new clinic space the Family Health Resource Center and Library was envisioned as a program central to serving the mission of the clinic and as an integrated complement to existing programs such as therapeutic recreation activities, wellness services, psychology services, nutrition programming, patient education, and education initiatives. Members of the clinic’s leadership team, colleagues from the NYU Medical Center’s (NYUMC) Health Sciences Libraries, supporters from the Citigroup Foundation, and numerous other collaborators worked together to draft a vision for implementing educational programming through a new consumer health service line. Through a process of multi-disciplinary discussions and extensive reflection on the needs of patients and families, the Family Health Resource Center and Library was created to provide informational support to patients and their families during times of serious medical problems and illnesses.

 

Who Provides Professional Staffing for the Patient Library?

The Family Health Resource Center and Library is staffed by a professional medical librarian who holds a Master’s degree in information studies, a program of study that is recognized and accredited by the American Library Association. Additionally, the clinic’s Family Health Librarian has experience as a primary school teacher and holds special school library certification earned through a carefully prescribed program of study, field experience in a school library setting, and professional examinations. The clinic’s librarian also has special training and experience related to working with individuals in a healthcare setting and works to connect patients and families to quality information resources while making it clear that she is not qualified to interpret medical information or to give medical advice.

The Family Health Librarian is a faculty member of NYUMC’s Ehrman Medical Library where she, as other library faculty members, serves on various library-related committees and teams. As one of three medical librarians specializing in consumer health information services at NYUMC, the Family Health Librarian works closely with counterpart librarians from the adult cancer center and the main hospital. Each of NYUMC’s three consumer health librarians serves distinct audiences and populations, but they work as a team to accomplish common program goals related to patient-centered care and current issues in consumer health.

 

How are Library Services Integrated within the Clinic?

As a relatively small hematology and oncology outpatient clinic, the SDHCC provides a special, personalized patient-family experience. In this unique setting the Family Health Librarian is one of the multidisciplinary professionals serving on a patient’s care team. New patients and families are often introduced to the clinic’s librarian during an initial visit and clinic tour. The librarian participates in weekly medical and psychosocial rounds and contributes to psychosocial patient care planning. The librarian’s unique perspective and knowledge of families’ questions and struggles allow her to understand the personal world of the patients and their families1 and to bring that understanding to discussions related to patient care within clinic team meetings. The services of the Family Health Librarian are integrated into the multidisciplinary care team of all patients, both through the outpatient clinic experience as well as during any inpatient hospital stays. The personalized approach and librarian integration into patient care is important; in fact, research shows that clinical library services influence patient health outcomes and can save time for healthcare providers.2

 

What Library Programs and Services Support Families?

When a family is faced with the news of a child’s life-threatening illness or serious medical condition, all family members need support during this difficult time. Very often parents, grandparents, aunts, uncles, brothers, sisters, family friends, and even the patients seek information about diagnosis or treatment to help them come to terms with an illness or medical condition. At the SDHCC, the interdisciplinary care team works together to provide a wide range of resources and patient education materials for families as they adjust to the medical diagnosis of their loved one. The resources of the Family Health Resource Center and Library include access to specialized electronic and print-based health materials, professional medical literature searches, computer workstations, instructional assistance using searching and informational tools, reading materials for young children and the professional assistance of a medical librarian. Through these services and resources many patients and family members are able to “obtain, process, and understand the basic health information and services they need to make appropriate health decisions,”3 characteristics which commonly define health literacy.

 

How are Health Literacy Issues Addressed?

Health literacy is an important part of effectively engaging patients in their care; it is a fundamental part of patient and family centered care.3 More than the ability to merely decode health and medical language,4,5 health literacy requires complex skills and critical thinking; it refers to a person’s ability to understand and to act on information that directly affects his or her well being.3,6,7 It is also key to ensuring patient safety.8

Not surprisingly, many patients and families treated at the SDHCC clinic struggle with health literacy issues, as do 50% of the adult American population3 of varying educational and socioeconomic backgrounds. In order to provide the best possible care environment, clinic staff members work together to create opportunities for patients and family members to be engaged, informed, and active participants in their own care. The SDHCC families have interpretive language services available to them, translated patient education materials are provided with side-by-side English translations, written materials are created in jargon-free simplified language,9 a patient advocate helps struggling families navigate the health care maze, and families have the opportunity to work with the family health librarian for learning enrichment. Because of the small size of the clinic, interdisciplinary team members are able to identify patients, parents, or family members who have notable literacy and health literacy issues. Together the team is able to brainstorm possible solutions during psychosocial care plan meetings.

 

How is Patient Education Supported Through Interdisciplinary Work?

The SDHCC’s Family Health Resource Center and Library provides a centralized collection of materials that supports and assists members of a patient’s care team in educating patients, their family members, and their caregivers about disease and treatment information. Family members normally receive a packet of information about a patient’s medical condition and treatment plan from their physician or nurse practitioner at their initial visit; often the librarian plays a key role in this service by locating resources for the clinical staff. The Family Health Resource Center and Library also provides a place where patients and family members can turn for accurate, reliable patient information that complements the clinical visit. Patients and family members are able to improve their understanding about diagnosis and treatment and to be empowered to communicate better with their physician or healthcare provider.10

Having clearly written information about diagnosis or treatment makes it easier for families to digest the news of a serious medical condition during what is recognized as a naturally distressing event that interferes with a person’s ability to “absorb or remember information.”11 Research shows that a person’s capacity for remembering medical information during times of stress is challenged11; in fact, some estimates claim patients immediately forget 40% to 80% of what they are told by their doctors.12 Certainly, written patient education materials are most effective when they are presented in combination with other educational approaches such as a patient’s oral consultations with a physician or nurse educator.8 Patient education efforts at the SDHCC clinic employ this two-part written and oral approach, and, as much as possible, they are tailored to an individual’s learning and cognitive style.

 

What Influences a Person’s Information Style?

As information seeker’s parents and family members at the clinic are representative of the larger population, people have different learning styles, tolerances for quantities of information, coping strategies, and levels of interest in being informed.11 Numerous factors can affect a person’s interest in receiving health information and his or her ability to process it. Educational levels, literacy levels, cultural beliefs, presentation styles of health professionals, individual personality characteristics, and experiencing distress all affect a person’s unique informational style.11 By working with a librarian, parents are able to access accurate and reliable information that makes sense to them. A librarian can also help parents and family members gain confidence in communicating during medical appointments.10

Parents, family members, and patients alike benefit from their library experience on numerous levels. For some, being better informed about the latest advances in medical research gives a family satisfaction and an informed approach to treatment choices that is known as “evidence-based patient choice.”8 For others, additional information may ensure they are more compliant with medications and treatment regimens. Still others gain personal confidence and a vocabulary that allow them to communicate better with their physicians. Recently, one mother asked the Family Health Librarian for help accessing medical articles she could present to her daughter’s physician because she said, “I want our doctor to know that I have intelligence.”

 

How Does a Patient Library Help Consumers Seeking Information On the Internet?

Understandably there are physician concerns about patients getting medical information on the Internet.13 Certainly, families facing a devastating illness or medical problem can easily find themselves intrigued by the promise of a miraculous cure that might seem available online. Often it can be difficult for even the well-educated and sophisticated consumer to discern reliable health sources from those of shrewd advertisers representing products for sale. Because so many people are seeking health information online, it is important to empower patients with resources and skills to ensure they are getting correct and reliable information. The Family Health Librarian works with patients and family members to connect them with trustworthy information and to show them strategies for critically evaluating online health information.

Although all new patients and families are given educational materials and information about community support resources by their care team, many parents and older patients engage in self-directed inquiry often even before their relationship with the SDHCC begins. The Pew Internet and American Life Project has estimated that eight out of every ten Internet users have looked for health information online.14 In households with Internet access among people with a chronic illness or disability, such numbers are even higher.15 Many of the center’s parents are very sophisticated Internet users. They often approach medical research as a way of coping with their child’s illness or a way of making order out of a chaotic process. These parents are able to find reassurance and support by connecting to specialized medical literature resources, by accessing full-text articles, by improving their PubMed searching skills through tutorials with the librarian, and learning about trustworthy consumer Websites such as MedlinePlus. However, other parents and families may not have computers at home and may be unskilled at accessing online information. For them, the SDHCC library is a place where they have access to computers and where they can hone basic computing skills.

 

How is a Patient Library Collection Built?

In order to build a collection that ably serves the needs of the entire clinic population, the Family Health Librarian identifies and purchases high quality health resources that are written in accessible language on a wide variety of childhood cancers, blood disorders, and vascular anomalies. Many of the print materials available as booklets or brochures are procured from well-respected national health or professional organizations such as the American Academy of Pediatrics, the Association of Pediatric Hematology-Oncology Nurses, the Leukemia and Lymphoma Society or the National Cancer Institute. As part of NYUMC, the Family Health Resource Center and Library shares a wealth of resources from the larger medical center and university communities. Often parents and staff benefit from personalized instruction about specialized databases of academic medical literature and electronic resources that are available through the NYU Health Sciences Libraries. The clinic’s library retains basic medical textbooks, medical dictionaries, and drug manuals to serve as reference materials to medical and nursing staff as well as interested parents.

The SDHCC’s collection also reflects the diversity of the clinic’s patient population and the importance of providing informational help for the psychosocial needs of families facing serious medical diagnoses. Respect for different cultural sensitivities and practices is paramount, as parents and family members of all cultural backgrounds come to the SDHCC library looking for information that can help them handle difficult emotional and parenting situations that arise during the sustained family stress of managing the care for a seriously ill child. The materials held in the library aim to serve the unique heterogeneous needs of all SDHCC patients and families, which is a special challenge in New York City. The clinic’s library serves families representing a wide range of nationalities, religious backgrounds, educational levels, languages spoken, and cultural practices. Young patients influence the library’s collection development policy by making requests. For example, two young school age male patients recently approached the librarian separately to suggest more picture books for leisure reading should be available in Russian and Chinese languages.

 

What is the Role of Bibliotherapy and Therapeutic Books for Children?

As expected, most often the information seekers served by the Family Health Resource Center and Library are a patient’s parents. Parents look for information related to their child’s diagnosis and treatment, but there are often numerous unexpected turns in the lines of inquiry. Frequently, parents ask the clinic librarian for information about how to address sensitive issues and questions raised by other young children in the family or by a child’s classmates and friends. Topics such as dealing with a serious medical problem, facing fears related to the medical environment, handling bullies or teasing by peers,16 or discussing death are just some of the specialized topics addressed in therapeutic picture books held in the collection. Very often these specialized books are written by psychologists who have special expertise in working with young children. The books interweave storylines and imaginative illustrations that help children internalize a story’s message; in some instances readers can practice cognitive skill-building through the story process by drawing on the experiences and problem solving skills of a story’s characters.

Parents have reported to the Family Health Librarian that through the experience of reading therapeutic picture books with their children, many important conversations occur. As with other kinds of reading, children find comfort in stories that mirror their personal experience. After identifying with a story’s main character and drawing correlations to their lives, children are able to experience emotional catharsis and ultimately gain deeper insight into their own personal psychosocial experience.16 Parents are able to discuss sensitive topics indirectly by asking their children questions about the reading material and the experiences of a story’s characters. During the experience of reading, parents and children are able to spend important time together that facilitates bonding and supports healthy habits for child development. Bibliotherapy, the process of reading for therapeutic value, is an important part of the healing process for many young patients facing illness, disability, or psychosocial challenges to help them process their feelings.16-20

 

How Does the Library Support Family Literacy and School Readiness?

Family reading and encouragement for early literacy are also emphasized through the clinic’s Reach Out and Read (ROR) program, which is managed through the Family Health Resource Center and Library by the Family Health Librarian. ROR is a national program in which physicians and healthcare providers encourage reading and early literacy among children who are 6 months to 5 years of age. During staged visits that correspond to childhood developmental milestones, patients receive a developmentally appropriate book that is theirs to keep. At the same time, parents receive literacy guidance, modeling, and encouragement from the medical provider who underscores the importance of daily reading to young children.21 For example, healthcare providers give their patients personalized “prescriptions” to read. These interactions are important, not only for the benefit of the young patient but very often they offer encouragement to parents who are non-native speakers of English or who are struggling with their reading abilities. This program is popular among patients and their parents, but it is also a favorite among the physicians and nurse practitioners who are able to have a meaningful non-medical encounter with patients during the ROR interaction.

The SDHCC’s patient library is a natural fit for Reach Out and Read programming. Because the clinic serves a large Medicaid and Medicaid-health maintenance organization population, it meets the ROR program goal of targeting at-risk and underserved families during well-child visits at a time when the SDHCC serves their primary care needs. The ROR program model complements the clinic’s approach to care because it employs an interdisciplinary approach22 to personal wellness and family and child resilience.

 

Conclusion

The SDHCC’s Family Health Resource Center and Library provides a unique and interdisciplinary service line and programming within the clinic. As one psychosocial component of the SDHCC care team, library services are a vital part of actualizing the clinic’s mission to provide patient and family-centered care. SDHCC’s Family Health Resource Center and Library provides programming and services to enhance the educational experiences of patients and family members, address issues in health literacy, improve patient and physician communication, support patient education, assist parents in having conversations with their children, support family literacy, and reflect individual learning styles. A strength of the Family Health Resource Center and Library program, as with all clinic services, is that families receive very personalized attention and care.

Visiting the library can be a very normalizing experience for many patients and their family members. For example, some patients and siblings make a point of visiting the library during every clinic visit. This familiar and pleasant experience reminds them of visits to their school or public library. Patients, siblings, family members, and caregivers seek out the library, not only for information, resources, homework help, research assistance, and help searching the Internet but also for a quiet place away from the bustling activity of the clinic and the playroom areas. For many of the SDHCC patients and families, visiting the library is a conscious choice. PP

 

References

1.    Zipperer L, Gillaspy M, Goeltz R. Facilitating patient centeredness through information work: seeing librarians as guests in the lives of patients. Journal of Hospital Librarianship. 2005;5(3):1-15.
2.    Weightman AL, Williamson J. The value and impact of information provided through library services for patient care: a systematic review. Health Info Libr J. 2005;22(1):4-25.
3.    Nielsen-Bohlman L, Panzer AM, Kindig DA, eds. What is health literacy? In: Nielsen-Bohlman L, Panzer AM, Kindig DA, eds. Health Literacy: A Prescription to End Confusion. Washington, DC: The National Academies Press; 2004:31-58.
4.    Larson L. Health literacy: how are your patients reading you? Trustee. 2007;60(5)8-12.
5.    Muro A. What is health literacy? Health and Literacy Special Collection from National Institute for Literacy LINCS Project. Available at: www.lincs.worlded.org/muro.htm. Accessed May 23, 2008.
6.    Kutner M, Greenberg E, Jin Y, Paulsen C. The health literacy of America’s adults: results from the 2003 national assessment of adult literacy (NCES 2006-483). U.S. Department of Education. Washington, DC: National Center for Education Statistics; 2006.
7.    U.S. Department of Health and Human Services. Healthy People 2010: Understanding and Improving Health. 2nd ed. Washington, DC: U.S. Government Printing Office, November 2000. Available at: www.healthypeople.gov/Document/. Accessed May 23, 2008.
8.    Coulter A, Ellins J. Effectiveness of strategies for informing, educating, and involving patients. BMJ. 2007;335(7609):24-27.
9.    Aldridge MD. Writing and designing readable patient education materials. Nephrol Nurs J. 2004;31(4):373-377.
10.    Ochillo M, Auflick PA. Health literacy and consumers: empowering patients. Journal of Hospital Librarianship. 2005;5(2):57-64.
11.    Harris KA. The informational needs of patients with cancer and their families. Cancer Pract. 1998;6(1):39-46.
12.    Kessels RP. Patients’ memory for medical information. J R Soc Med. 2003;96(5):219-222.
13.    Shaw J, Baker M. “Expert patient”–dream or nightmare? BMJ. 2004;328(7442):723-724.
14.    Pew Internet & American Life Project. (2005) Health information online. Available at: www.pewinternet.org/PPF/r/156/report_display.asp. Accessed May 23, 2008.
15.    Ayers SL, Kronenfeld JJ. Chronic illness and health-seeking information on the Internet. Health (London). 2007;11(3):327-347.
16.    Gregory KE, Vessey JA. Bibliotherapy: a strategy to help students with bullying. J Sch Nurs. 2004;20(3):127-133.
17.    Amer K. Bibliotherapy: using fiction to help children in two populations discuss feelings. Pediatr Nurs. 1999;25(1):91-95.
18.    Burke RV, Kuhn BR, Peterson JL. Brief report: a “storybook” ending to children’s bedtime problems – the use of a rewarding social story to reduce bedtime resistance and frequent night waking. J Pediatr Psychol. 2004;29(5):389-396.
19.    Shechtman Z. Bibliotherapy: an indirect approach to treatment of childhood aggression. Child Psychiatry Hum Dev. 1999;30(1):39-53.
20.    Tolin DF. Case study: bibliotherapy and extinction treatment of obsessive-compulsive disorder in a 5-year-old boy. J Am Acad Child Adolesc Psychiatry. 2001;40(9):1111-1114.
21.    Reach Out and Read National Center website. Available at: www.reachoutandread.org.Accessed May 23, 2008.
22.    Bailey R, Louis RK. Reach out and read: promoting pediatric literacy guidance though a transdisciplinary team. J Health Care Poor Underserved. 2005;16(2):225-230.

 

Needs Assessment: This article aims to educate others who are less familiar with the psychosocial care needs of pediatric hematology/oncology populations. The article provides a description of multidisciplinary collaborations within the same program in contrast to services accessible to this population via outside referrals.

Learning Objectives:
• List issues that arise for children with chronic illness.
• Understand the steps required for organizing a multidisciplinary approach to psychosocial care.
• Ask questions about how children and families can be best served in outpatient clinics.

Target Audience: Primary care physicians and psychiatrists.


CME Accreditation Statement:
This activity has been planned and implemented in accordance with the Essentials and Standards of the Accreditation Council for Continuing Medical Education (ACCME) through the joint sponsorship of the Mount Sinai School of Medicine and MBL Communications, Inc. The Mount Sinai School of Medicine is accredited by the ACCME to provide continuing medical education for physicians.


Credit Designation:
The Mount Sinai School of Medicine designates this educational activity for a maximum of 3 AMA PRA Category 1 Credit(s)TM. Physicians should only claim credit commensurate with the extent of their participation in the activity.

Faculty Disclosure Policy Statement: It is the policy of the Mount Sinai School of Medicine to ensure objectivity, balance, independence, transparency, and scientific rigor in all CME-sponsored educational activities. All faculty participating in the planning or implementation of a sponsored activity are expected to disclose to the audience any relevant financial relationships and to assist in resolving any conflict of interest that may arise from the relationship. Presenters must also make a meaningful disclosure to the audience of their discussions of unlabeled or unapproved drugs or devices. This information will be available as part of the course material.

This activity has been peer-reviewed and approved by Eric Hollander, MD, chair and professor of psychiatry at the Mount Sinai School of Medicine, and Norman Sussman, MD, editor of Primary Psychiatry and professor of psychiatry at New York University School of Medicine. Review Date: June 4, 2008.

Drs. Hollander and Sussman report no affiliation with or financial interest in any organization that may pose a conflict of interest.

To receive credit for this activity: Read this article and the two CME-designated accompanying articles, reflect on the information presented, and then complete the CME posttest and evaluation. To obtain credits, you should score 70% or better. Early submission of this posttest is encouraged: please submit this posttest by July 1, 2010 to be eligible for credit. Release date: July 1, 2008. Termination date: July 31, 2010. The estimated time to complete all three articles and the posttest is 3 hours.

Primary Psychiatry. 2008;15(7):63-67

 

Dr. Cruz-Arrieta is senior psychologist and clinical assistant professor in both the Departments of Child & Adolescent Psychiatry and Pediatrics at the New York University (NYU) School of Medicine in New York City. Ms. Weinshank is licensed clinical social worker in the Social Work Department at NYU Langone Medical Center.
Disclosure: The authors report no affiliation with or financial interest in any organization that might pose a conflict of interest.

Please direct all correspondence to: Eduvigis Cruz-Arrieta, PhD, Stephen D. Hassenfeld Children’s Center for Cancer and Blood Disorders, 160 E 32nd St, Second Floor, New York, NY 10016; Tel: 212-263-9925; Fax: 212-263-8410; E-mail: Eduvigis.cruz-arrieta@nyumc.org.

 


 

 

Abstract

Scientific advances that lead to early detection and treatment of childhood illnesses once fatal to most children have contributed to higher survival rates. This article outlines a model used at the Stephen D. Hassenfeld Children’s Center for Cancer and Blood Disorders for providing outpatient cancer and hematology treatments facilitated and supported by allied health professionals. Coping is sometimes compromised by biopsychosocial factors present in the lives of patients prior to illness. Allied health professionals help patients and families cope by providing a supportive environment for the child with a chronic illness and his or her family. A multidisciplinary team approach is illustrated in this article. The authors describe the process of creating a pathway toward holistic care for all patients, from designing tools that integrate basic information about each patient ‘“in context’’ to how this is accomplished. Two case examples of collaboration between disciplines are provided. Finally, ideas on the need for research that demonstrates the benefits of psychosocial interventions and the need for dissemination of information about what works within the pediatric, allied health, and mental health professions are offered.

 

Introduction

The Stephen D. Hassenfeld Children’s Center for Cancer and Blood Disorders (SDHCC) of New York University Langone Medical Center functions both as a day hospital and an outpatient medical facility for children with cancer and blood disorders. It provides modern medical treatments facilitated and supported by allied health professionals. The last 30 years have witnessed scientific advances that led to earlier detection and treatment of childhood illnesses once fatal for most children. For example, the 5-year survival rate in pediatric cancer is approximately 80%, resulting in a continuously growing population of childhood cancer survivors. Data collected in the last 10 years shows ≥270,000 survivors of childhood cancer in the United States. One in 1,000 individuals is a childhood cancer survivor. Demographics of the childhood cancer survivors in the US show that while 33% of these survivors are <20 years of age, 46% are 20–40 years of age, and an additional 18% are >40 years of age.1

Children affected with blood disorders such as sickle cell anemia are transitioning into longer, productive lives with significantly less impairment than before thanks to transfusion and oral medication therapies. However, despite the development of promising future cures through procedures such as bone marrow transplants and gene therapies, inadequate attention to psychological, social, and interpersonal functioning is still present.2 Along with these changes, the need for supportive services (ie, nursing and medical teams) for children, families, and caregivers coping with a chronic, life-threatening illness have evolved in specialized ways to further them.3 In the 1990s, changes in health care led to a reduction of available psychosocial services because they were perceived as expensive and “less essential than other evaluations and interventions.”4

Most people who experience a chronic and/or life-threatening disease cope adequately with the stressors it brings. However, this is not an easy task. For a smaller number of patients and families, their coping is compromised by biopsychosocial factors present in their lives prior to the illness (eg, financial difficulties, psychological disorders). Child life, creative arts therapies, family health librarian, pastoral care, psychology, recreation and rehabilitation therapies, and social work, along with the newly integrated complementary therapies, including mind/body techniques such as aromatherapy, acupuncture/acupressure, dance-movement therapies, herbalism, hypnotherapy, therapy massage, music, Reiki, and yoga, now offer tools and support focused on the needs of ill children and survivors of childhood diseases. These therapeutic activities provide children with age-appropriate ways to identify and discuss numerous feelings associated with treatment.4

The SDHCC’s allied health professional staff, comprised by the disciplines outlined above, is dedicated to providing a positive, nurturing, and supportive environment for children with a chronic illness and their families. This psychosocial team focuses on helping children gain and maintain developmental skills during their illness, hospitalization, and treatment.4 At the SDHCC, the family health librarian is a member of the psychosocial team that participates in clinical discussions. This is anchored in the understanding of these professionals’ contribution to the therapeutic needs of patients and families via their input, selection, and recommendations of bibliotherapy resources. Similarly, pastoral care services that address the spiritual and religious needs of patients and families are a core component of the group’s work (S. Harding, personal communication, August 2007).

Both the quality of patients and parents’ perception of the support received and their individual reactions at the time of diagnosis determines the experience at different stages of medical treatment. It colors their transition out of treatment. The authors believe that a multidisciplinary team approach3,5-7 is essential, as they describe the process of creating a pathway toward holistic care for all patients from the designing of tools that integrate basic information about each patient “in context” to how they accomplish this. Two examples of collaboration between disciplines are offered. The authors hope that these practices lead to well-adjusted survivors of childhood cancer.4

 

Pathway

In an effort to fine-tune the available therapeutic offerings, as well as keep a finger on the pulse of the team’s professional interests and potential contributions, periodic meetings focusing on program planning were organized with administrative leadership. A survey that combined feedback from parents and staff was designed and conducted, and its results were compiled by a social work trainee. The results were incorporated into an in-service presentation for all staff to assist with program planning. How patients and their families moved from the point of diagnosis to participation in active treatment was reviewed.

 

Assessment

The SDHCC’s social workers obtained various tools already in use in similar local hospital settings. One model was selected and adapted for the author’s purposes in a series of multidisciplinary reviews. The authors examined its ease of use, whether it built-in basic relevant information regarding each child, its cultural relevancy, and the inclusion of all professionals needed for child-in-context services. The clinic’s manager consulted with hospital administration concerning the viability of the document draft and the protocol for approval.

 

The Process of Meeting New Patients

The tool adaptation was followed with a review of communication pathways, starting from the moment patients enter the medical center’s system to their first visit to the clinic (Table 1).

 

The psychosocial rounds forum is a meeting in which high-risk issues are identified from the initial interview and impressions and concerns are articulated. The main objectives are to design a multidisciplinary care plan for patients and caregivers, discuss in greater detail relevant psychosocial/behavioral health issues, prepare to follow up with those issues by presenting them at our Interdisciplinary Medical Rounds, and address urgent issues or emergencies. In addition, this meeting serves as a forum for program planning and administrative problem-solving related to services provided to patients.

The standard procedure for case discussions begins with soliciting patients’ names and topics from all medical/psychosocial staff in advance to generate a list for discussion. Urgent issues are addressed first, followed by newly diagnosed patients and a review of ongoing cases. For new patients, a care plan is designed. For existing patients, the care plan is periodically reviewed.

A summary of the discussion is shared with all faculty and staff in medical rounds. The patient’s chart, psychosocial assessment form (excerpted in Table 2), and psychosocial treatment planning form (excerpted in Table 3) are used to guide the psychosocial discussion.

 

 

 

This form is completed by the social workers after completing three meetings with a new patient and his or her family. Table 2 contains examples of basic psychosocial information included in the form. The information collected is shared with the team. When a patient is referred to other disciplines, this is noted in the “professional collaboration” section. The form is stored in the patients’ medical record. From there on, all pertinent allied healthcare providers document psychosocial interventions in the progress notes section of the medical record.

Table 3 shows a section of the treatment planning form used to organize the psychosocial care plan. Not shown are the list of all disciplines available to work with each child and the short- as well as long-term goals section. This form is brought to the psychosocial rounds and used as part of the treatment planning for the patient. After the initial psychosocial assessment is discussed, the patient is referred to other disciplines if not previously done. The date of the referral is noted, and the form is filed in the patients’ medical record. As each team member meets with the patient or after interventions are completed, these are noted and dated in the form. A full progress note is then added to medical record explaining the intervention.

Patients’ care can be brought up by any staff member whenever issues arise. The following cases, concerning Linnea and Beth, provide a general view of how these routine procedures work.

 

Case Examples

Case 1: Linnea

Linnea, a 7-year-old female recently diagnosed with medulloblastoma, was left visually impaired after having emergency brain surgery prior to beginning treatment. Her vision loss was not discovered until after she began her chemotherapy and radiation protocol. Linnea presented as a shy, quiet child who did not interact much with psychosocial or medical staff. Her mother was constantly tearful but was not forthcoming in discussing these feelings with staff. The psychosocial team was introduced to Linnea and her mother with the goal of ameliorating the crisis of a diagnosis of pediatric brain cancer and the medical crisis of losing part of her vision. Linnea responded well to social work and art therapy staff. Ongoing sessions were arranged where Linnea could produce artwork that helped her express her feelings regarding her diagnosis. Linnea also used imaginative play therapy to cope with painful medical procedures and long hours of receiving chemotherapy. (A general description of these interventions can be found elsewhere.)8

Linnea’s mother met with the psychologist who assisted her in understanding how to help her daughter and other members of the family during this difficult time. In addition, the psychologist helped her figure out the extent of Linnea’s vision difficulties prior to her diagnosis. Linnea’s mother had expressed some guilt about whether there had been signs no one had noticed. Linnea’s decreased appetite and weight loss were also discussed, and her participation in creating a simple, palatable menu was encouraged. Various members of the team also worked with Linnea’s 8-year-old brother, Mike, who has a love of theatre and music. The music therapist succeeded in introducing music as the modality in which he could express his feelings surrounding his sister’s illness. This shows how easily psychosocial care extends to the whole family unit when the patient’s treatment is provided in context and services are available to address the different needs of its members.

Midway through Linnea’s treatment, eating issues became a concern. The psychosocial team was consulted again. The psychologist met with her mother to assess the reasons for Linnea’s appetite issues and to monitor possible mood changes secondary to her medical conditions. Consultations with the inpatient unit team and a consultation/liaison pediatric psychiatrist followed. Linnea’s social worker began to engage her in an age-appropriate manner in order to better understand why she was not eating. A plan to restructure Linnea’s meal times with parental assistance was devised and, in this way, the placement of a feeding tube was avoided. This was a temporary solution as the team is still trying to find out the best way to help her. The medical and psychosocial teams continue to collaborate to support this family through their battle with pediatric cancer.

 

Case 2: Beth

Beth is 8 years of age and was recently diagnosed with acute lymphocytic leukemia. Beth lives with her parents in a New York suburb. Her grandmother, who was her primary caregiver, also lives near the family. There were initial identified issues, including conflict within the family regarding caregiving and Beth’s anxiety toward medical procedures. Beth’s social worker spent time speaking with both the parents and the grandmother reviewing caregiving details. Beth’s mother had previously worked long hours and the grandmother had cared for her. Since diagnosis, the mother had stopped working and began to care for Beth full time. Role changes are often seen in families due to a medical diagnosis, as priorities change for all members of the family when faced with life-threatening circumstances. The mother expressed guilt over her not being able to spend time with Beth prior to her diagnosis. The grandmother felt distant from the family now that the mother was increasingly active with Beth’s daily care.

Team members directly working with the family assisted with creating a schedule for Beth’s care with which all members felt comfortable. They addressed the mother’s feelings of guilt and helped the grandmother feel comfortable with the new limitations on her caregiving role. The psychologist worked with them on basic parenting strategies such as relaxation techniques to decrease Beth’s anxieties. In addition, the expertise of Beth’s nurse for identifying medication strategies was incorporated to help the patient manage her anxieties before spinal taps in the event that non-pharmacologic strategies were not enough.

Both the music and art therapists contributed to Beth’s care by providing a multimodal intervention to calm her medical procedures anxieties. Family issues that are still impacting Beth’s treatment experience in the clinic continued to be addressed with the help of the team’s psychologist on an “as-needed” basis.

 

Conclusion

Psychosocial issues related to the treatment of pediatric illness have been given more attention in recent years.5,9-11 The authors believe that their interdisciplinary team model allows for the most comprehensive psychosocial care of patients and their families. They attempt to identify issues at an early stage and coordinate psychosocial care in a manner that alleviates some of the stressors associated with pediatric illnesses. Their team aims to enhance the quality of life of all patients and families treated at SDHCC.

Future directions of this effort include conducting research to demonstrate the benefits of psychosocial interventions. More information is needed on the existing benefits of the services provided formally and informally at the facility. Who benefits from what? Which interventions are prioritized by the families? Requesting and incorporating feedback from each family on how they and their child benefited from various psychosocial interventions will help refine the work.

The authors intend to compile a psychosocial care manual based on the practice model as well as that of other centers in the US and abroad. Its goal is to provide a map to make the provision of modern medical treatments facilitated and supported by allied health professionals an essential part of any center’s mission. Such models have been designed before3 but are not readily available; others require updated information on how to provide services that fit the needs of families living in complex social contexts with cultural, financial, political, educational, and spiritual12 challenges that are part of living with cancer and other chronic childhood diseases. This manual will offer basic principles of psychosocial care, as well as general interventions that can be implemented by different disciplines either collaboratively or individually. It will also include specialized modules for patients and families at higher risk of having more difficulties with the experience of diagnosis and treatment. Dissemination of information about what works for the authors within the pediatric, allied health, and mental health professions will follow. The poet Maya Angelou said, “Children’s talent to endure stems from their ignorance of alternatives.”13 Primary care physicians can help them endure less and cope more successfully by their knowing what works and creating better alternatives. PP

 

References

1. Bhatia S. Cancer survivorship–pediatric issues. Hematology Am Soc Hematol Educ Program. 2005;507-515.
2. Edwards CL, Scales MT, Loughlin C, et al. A brief review of the pathophysiology, associated pain, and psychosocial issues in sickle cell disease. Int J Behav Med. 2005;12(3):171-179.
3. Kusch M, Labouvie H, Ladisch V, Fleischhack G, Bode U. Structuring psychosocial care in pediatric oncology. Patient Educ Couns. 2000;40(3):231-245.
4. Kazak AE, Cant MC, Jensen MM, et al. Identifying psychosocial risk indicative of subsequent resource use in families of newly diagnosed pediatric oncology patients. J Clin Oncol. 2003;21(17):3220-3225.
5. Hicks MD, Lavender R. Psychosocial practice trends in pediatric oncology. J Pediatr Oncol Nurs. 2001; 18(4):143-153.
6. Creagan ET. Psychosocial issues in oncologic practice. Mayo Clin Proc. 1993;68(2):161-167.
7. Kaufman KL, Harbeck C, Olson R, Nitschke R. The availability of psychosocial interventions to children with cancer and their families. Child Health Care. 1992;21(1):21-25.
8. Nesbitt LL, Tabatt-Haussmann K. The role of the creative arts therapies in the treatment of pediatric hematology and oncology patients. Primary Psychiatry. 2008;15(7):56-58,61-62.
9. Mitchell W, Clarke S, Sloper P. Survey of psychosocial support provided by UK paediatric oncology centres. Arch Dis Child. 2005;90(8):796-800.
10. Waters EB, Wake MA, Hesketh KD, Ashley DM, Smibert E. Health-related quality of life of children with acute lymphoblastic leukaemia: comparisons and correlations between parent and clinician reports. Int J Cancer. 2003;103(4):514-518.
11. Ljungman G, McGrath PJ, Cooper E, et al. Psychosocial needs of families with a child with cancer. J Pediatr Hematol Oncol. 2003;25(3):223-231.
12. Harrison MO, Edwards CL, Koenig HG, Bosworth HB, Decastro L, Wood M. Religiosity/spirituality and pain in patients with sickle cell disease. J Nerv Ment Dis. 2005;193(4):250-257.
13. Angelou M. I Know Why the Caged Bird Sings. 1st ed. New York, NY: Random House; 1969.

 

Dr. Luo is associate clinical professor in the Department of Psychiatry and Biobehavioral Sciences at the University of California in Los Angeles; past president of the American Association for Technology in Psychiatry (AATP) in New York City; and Gores Informatics Advocacy chair at the AATP.

Disclosure: Dr. Luo reports no affiliation with or financial interest in any organization that may pose a conflict of interest.

 


 

E-mail has quickly become a preferential mechanism of communication today as evidenced by the growing numbers of smartphones, iPhones, and Blackberry communication devices used in both personal and work environments. Patients today are much more tech savvy, and have begun to rely upon health information on the Internet as well as utilize various Internet-based tools (eg, to assess themselves for depression, check their body mass index, and check their medications for drug interaction). The combination of soaring gasoline prices and increasing demands at the workplace for productivity has created a climate where electronic communication between physicians and patients will become more the norm rather exception. This column reviews privacy and security issues in health information technology in several modalities of electronic communication.

 

Security and Privacy Issues

One of the foremost concerns with any electronic communication or record is the issue of privacy and confidentiality. When a laptop computer was stolen from the Department of Veteran’s Affairs (VA) medical facility in Birmingham, Alabama in 2007,1 this sparked a major overhaul in the VA health system with regards to management of security.2 The Health Insurance Portability and Accountability Act (HIPAA) of 1996 was written to improve the Medicare program by encouraging the development of health information systems through the establishment of standards and requirements for electronic transmission of certain health information.3

As many physicians know already, HIPAA mandates that security measures and policies be implemented to ensure privacy and confidentiality of protected health information, but it does not specify what type of security mechanism. It recommends a combination of administrative, physical, and technical safeguards to protect the confidentiality, integrity, and availability of protected health information. These safeguards are designed to protect stored information from the risks of improper access and prevent interception during electronic transmission.

One way to avoid the regulations in HIPPA is to not be a covered entity such as a healthcare clearinghouse, health plan, or a healthcare provider who conducts certain financial and administrative transactions electronically. It may appear that a cash pay practice and a paper-based medical record are sufficient to bypass the rigors of HIPAA; however, such a perspective ignores the benefit of electronic records and transactions, which include ease of backup, portability, ease of transmission, multi-site availability, and ability to monitor and prevent access.

 

E-mail

Today’s patient is much more technologically savvy and regularly uses e-mail. Communicating via e-mail is not just for the young professional; even patients who have retired have begun to use e-mail.4 Slack4 noted that a patient saw e-mail as a benefit because it enabled him to write a question directly to his physician, instead of going via the telephone which would add additional layers to route the call. The patient only wrote once every 2 weeks, but found that being able to print out his question and responses helped him refer to them later. The patient’s physician believed that e-mails often replace conversations that would have happened on the phone anyway, and he felt that fortunately, there were no “rambling novels” of e-mails. The physician indicated that an e-mail exchange often takes less time than a phone conversation because the patient thinks ahead of time what specific question to ask in an e-mail. In this scenario, both patient and physician logged into a secure Internet site for patients.

Guidelines by Kane and Sands5 in 1998 for the clinical use of e-mail with patients outlined principles developed by the American Medical Informatics Association Task Force on Guidelines for the Use of Clinic-Patient Electronic Mail. Communication guidelines include establishing what types of transactions, such as appointment scheduling and subject matter sensitivity are permitted; turnaround time; informing patients about privacy issues such as who has access to these messages and that they are part of the medical record; and placing such communication in the paper chart. Medicolegal and administrative guidelines include obtaining informed consent for e-mail, using password-protected accounts, separating professional e-mail from personal e-mail, using encryption, and not forwarding patient identifiable information to third parties without the patient’s permission.

Today, e-mail encryption is still a cumbersome process that is not easy to implement. On the Microsoft Windows operating system, PKZIP offers a product called SecureZip for Desktop, which integrates with Microsoft Office applications such as Outlook, Word, Excel, and PowerPoint.6 This product compresses e-mail and encrypts it automatically to provide a seamless experience; however, the e-mail recipient must know and understand how to decrypt and decompress the file.

Another similar product on the Windows platform is PGP Desktop Email from Pretty Good Privacy (PGP) corporation.7 PGP was developed in 1991 by Phil Zimmermann8 as an e-mail encryption software package to promote human rights on the Internet. It has become a standard for encryption, and an open source version, OpenPGP, is available as well.9 An implementation of OpenPGP into a mail client is freely available at Gnu Privacy Guard,10 called Gpg4win.11 One of the caveats of installing Gpg4win is that knowledge of e-mail account type (post office protocol versus internet message access protocol), server name (incoming and outgoing), and account name and password is necessary for setup. PGP Desktop does offer a freeware version, which is only for non-commercial use, such as patients.

On the Mac operating system, there are several ways to provide encrypted e-mail. PGP offers a Mac version of its PGP Desktop E-mail product, and CryptoHeaven12 also offers both a Mac and PC version of its product. Mac GNU Privacy Guard13 is a free OpenPGP software program similar to Ggp4win. One of the challenges of installing encryption for e-mail is to understand that the PGP or Open PGP are merely encryption code, and must be implemented by software clients such as Gpg4win or Mac GNU Privacy Guard.

With the potential confusion with regards to installing OpenPGP clients, an alternative is to use a digital signature to “sign” e-mail.14 In this manner, what happens is that a “public key” is used to sign e-mails sent to a recipient, but only the recipient has the “private key” to decrypt that message. The challenge is that although individual users can create and send their own “keys,” it is insufficient to trust that they are who they are since it is easy to impersonate someone else in e-mail. Third party “certification authorities” such as Thawte15 establish trust by verifying one’s identity and then issuing the private and public keys. After obtaining the keys from Thawte, they must then be integrated into the mail client.

It appears that to implement an encryption method for one’s regular e-mail client is a process left to either the most technically savvy physician or the enterprise. A much simpler alternative is to utilize a secure Internet-based communication platform such as Network Research Labs S-Mail.16 Unlike many Internet browser-based e-mail systems, S-Mail implements the public key encryption system discussed above, but instead of requiring that the user manage the keys, S-Mail installs and manages them by creating them on the Java Virtual Machine on one’s computer. S-Mail is not encrypted when mail is sent to any other e-mail account, but it remains encrypted when both sender and recipient, eg, a patient and physician, are on S-Mail. It is important to understand that the company does not have access to e-mails, passwords, or private keys since these are on the user’s computer and not the company server. This system is not ideal for large groups or healthcare enterprise but may be perfect for individual practices since the service is free. The paid version offers larger mailbox as well as other encrypted storage.

The simplest option is to use a service such as RelayHealth,17 which requires no installation at all and it is entirely Internet-browser based secured via 128-bit Secure-Socket-Layer 3.0 encryption. Providers set up an account and may give administrative access to staff to initially read messages. In addition to secure electronic messaging, the system offers non-urgent asynchronous consultations, appointments, medication refills, and preventive care reminders. Patients sign up for free and may register their family members as well. Liederman and Moorefield18 at University of California, Davis Primary Care Network surveyed eight providers, their staff, and patients utilizing this system. Of registered users, 36.9% (238/645) responded to the survey, which demonstrated that both providers and patients preferred the Internet messaging system over phone calls for the communication of non-urgent problems. Almost all of the patients found it easy to use and were satisfied because their provider had a timely response. Clinicians were also favorable to the system despite concerns that they would be inundated with messages and therefore impacted in terms of productivity. Aetna has expanded its use of RelayHealth to include specialty providers and will reimburse for online consultations and other secure messaging services.19

 

Other Forms of Electronic Communication

Although e-mail has become the most common form of electronic communication between patients and physicians, instant message (IM) software may be used instead of e-mail. One of the advantages of IM is that it is centrally managed from a server and therefore is more stable compared to voice over Internet protocol (VOIP). Questions and responses are managed in real time and appear much less asynchronous. However, IM’s central management also is its weakness in terms of privacy as the system is an open network. There are numerous companies, such as Sigaba Secure IM, that will provide secure instant messaging. Security is provided either at the server level or as an encrypted tunnel through the public network.20 In all likelihood, the instant and intrusive nature of IM does not lend itself well to medical practice, but such a secured service could provide some benefit to patients who otherwise would not participate in health treatment, such as teenagers, who prefer text messaging and IM services. Once the “session” is over, a word for word transcription can be captured if the text session has not exceeded the buffer capacity or if the session has not been interrupted.

VOIP is another possibility for electronic communication since many therapists use a telephone session in lieu of an in-person session if patients are out of town or in transition to another location. Skype is a well-known VOIP service and it has both authentication and encryption to ensure the privacy of a session.21 This service is free to use from computer to computer over the Internet, but it also offers low-cost computer-to-landline and landline-to-computer calls. If desired, Skype calls can even be recorded onto the computer with audio recording programs.22 Even a computer is not necessary as mobile devices such as a personal digital assistant, the PlayStation Portable, and even Wi-Fi–enabled phones can use the Skype system.23 Many professional users may shy away from Skype since it is so well known, and therefore should try the Zfoneproject, which is encrypted by PGP and developed by Philip Zimmerman.24

Conclusion

Electronic communication with patients comes in many forms, both text based, voice, and perhaps even video. Without question, there are disadvantages to this form of communication such as privacy and security, in addition to its asynchronous nature. Simple yet robust e-mail security can be managed by both provider and patient, but may require both patience and technical support. The secure Internet-based communication hub appears to be favored by not only patients and providers, but insurance plans as well. In today’s digital age, despite the technological and HIPAA hurdles, both the busy patient and busy physician can benefit from electronic communication. PP

 

References

1.    Hubler D. New House VA Committee Chairman Laments Latest Laptop Loss. February 6, 2007. Available at: www.fcw.com/online/news/97587-1.html. Accessed May 13, 2008.
2.    Mosquera M. VA Security Still in Recovery Mode. April 7, 2008. Available at: www.fcw.com/print/22_8/policy/152134-1.html. Accessed May 13, 2008.
3.    Health Insurance Portability and Accountability Act of 1996. Available at: http://aspe.hhs.gov/admnsimp/pl104191.htm. Accessed May 13, 2008.
4.    Slack VW. A 67 year-old man who e-mails his physician. JAMA. 2004;292(18):2255-2561.
5.    Kane B, Sands DZ. Guidelines for the clinical use of electronic mail with patients. The AMIA Internet Working Group, Task Force on Guidelines for the Use of Clinic-Patient Electronic Mail. J Am Med Inform Assoc. 1998;5(1):104-111.
6.    SecureZip for Desktop. Available at: www.pkzip.com/software-data-security. Accessed May 13, 2008.
7.    PGP Desktop Email. Available at: www.pgp.com/products/desktop_email/index.html. Accessed May 13, 2008.
8.    Philip Zimmermann. Available at: www.philzimmermann.com/EN/background/index.html. Accessed May 13, 2008.
9.    Open PGP Alliance. Available at: www.openpgp.org. Accessed May 13, 2008.
10.    GnuPG. Available at: www.gnupg.org. Accessed May 13, 2008.
11.    Ggp4win. Available at: www.gpg4win.org/. Accessed May 13, 2008.
12.    CryptoHeaven. Available at: www.cryptoheaven.com. Accessed May 13, 2008.
13.    Mac GNU Privacy Guard. Available at: http://macgpg.sourceforge.net/. Accessed May 13, 2008.
14.    de Kermadec FJ. How to Set Up Encrypted Email on Mac OS X. Available at: www.macdevcenter.com/pub/a/mac/2003/01/20/mail.html?page=1. Accessed May 13, 2008.
15.    Thawte Personal E-mail Certificates. Available at: www.thawte.com/secure-email/personal-email-certificates/index.html?click=DoYouNeedTo-SecureMail. Accessed May 13, 2008.
16.    Network Research Lab S-Mail. Available at: www.nrlab.com/main.php?pg=s-mail&subpg=overview or www.s-mail.com. Accessed May 13, 2008.
17.    RelayHealth. Available at: www.relayhealth.com. Accessed May 13, 2008.
18.    Liedeman EM, Morefield CS. Web messaging: a new tool for patient-physician communication. J Am Med Inform Assoc. 2003;10(3):260-270.
19.    Aetna Expands Availability Of RelayHealth‘s Secure Online Messaging And Consultations Nationwide, Includes Specialists. Available at: www.aetna.com/news/2007/1219.htm. Accessed May 13, 2008.
20.    Sigaba Secure IM. Available at: www.sigaba.com/sec_products/secure_im/index.shtml. Accessed May 13, 2008.
21.    Skype. Available at: www.skype.com/security/security/. Accessed May 13, 2008.
22.    How to Record Skype Phone Calls. Available at: www.how-to-capture-streaming-media.com/record_skype_phone_calls/record_skype_phone_calls.htm. Accessed May 13, 2008.
23.    Skype on Your Mobile Device. Available at: www.skype.com/mobile/. Accessed May 13, 2008.
24.    Zfone. Available at: http://zfoneproject.com/prod_zfone.html. Accessed May 13, 2008.

 
Dr. Robinson is a consultant with Worldwide Drug Development in Burlington, Vermont.

Disclosure: Dr. Robinson has served as a consultant to Bristol-Myers Squibb, CeNeRx, Epix, Genaissance, Johnson and Johnson, PGxHealth, Pfizer, Schering Plough, Somerset, and Takeda.

 


Alzheimer’s disease is a progressive neurodegenerative disorder of increasing prevalence, clinically manifested by memory impairment and declining cognition. Approximately 25 million people worldwide suffer from dementia as a result of Alzheimer’s disease.1 Greater than 50% of individuals with Alzheimer’s disease experience agitation, aggression, delusions, or hallucinations during the course of their illness.2 These behavioral disturbances of Alzheimer’s disease pose difficult management problems because existing agents are not fully effective and safe; better pharmacotherapy is needed. Antipsychotics are widely prescribed to treat behavioral disturbances in Alzheimer’s disease patients, although recent safety concerns with the atypical antipsychotics have led to more restrictive labeling imposed by the Food and Drug Administration.

 

 

Prevalence of Agitation in Alzheimer’s Disease Patients

Long-term observation of patients with mild-to-moderate Alzheimer’s disease randomized to placebo treatment as part of a 1-year double-blind, controlled trial found agitation to be the most common symptom.3 Agitation/aggression occurred in 54% of patients over 1 year of observation, followed next in incidence by depression (50%) and psychosis (36%). Agitation was associated with greater cognitive impairment. Presence of psychotic symptoms correlated both with more rapid cognitive decline and with age. In a 2-year observational study tracking behavioral and psychological symptoms in Alzheimer’s disease patients, agitation and aggression were the most frequent as well as persistent symptoms and, in addition to psychotic symptoms, were harbingers of more rapid progression of the disorder.4  

Numerous health economic surveys5 implicate behavioral symptoms in Alzheimer’s disease as significant independent predictors of  need for institutionalization and higher patient care costs. The magnitude of the cost differential associated with behavioral problems in Alzheimer’s disease patients averaged an additional $10,000 to $15,000 per year compared with those without these clinical manifestations of Alzheimer’s disease.

 

Antipsychotic Therapy in Alzheimer’s Disease

Antipsychotics are widely used to treat dementia in elderly patients. According to a statewide survey of Medicare beneficiaries in nursing homes, >25% of patients received treatment with an antipsychotic.6 Antipsychotics have been a mainstay of pharmacologic therapy for agitation and aggressive behavior despite limited effectiveness and recent safety concerns.7,8

Over the last decade, atypical antipsychotics largely replaced first-generation antipsychotics as the preferred treatment for behavioral disturbances in elderly patients with dementia because of  perceived safety advantages over traditional antipsychotics and other psychotropic drugs, including the benzodiazepines and anticonvulsants. Safety advantages include less orthostatic hypotension or adverse effects on cardiac repolarization (prolonged QT), less sedation, and decreased liability for movement disorders.

The unexpected findings of higher mortality and incidence of stroke during atypical antipsychotic treatment of Alzheimer’s disease patients in placebo-controlled trials led to warnings and restrictions in product labeling of antipsychotics imposed by the FDA.6,8 There was a consistent pattern of small but significant increases in mortality and strokes in trials of each of the atypical antipsychotics compared with placebo treatment.8,9 The Committee for the Safety of Medicines in the United Kingdom has imposed similar constraints on the use of atypical antipsychotics in dementia patients.

Trials have shown that atypical antipsychotics provide only modest benefits for the behavioral symptoms of Alzheimer’s disease. In the absence of aggressive behavior, there were no differences in improvement of agitation between antipsychotic and placebo treatment.8 Both risperidone and quetiapine lacked efficacy compared with placebo treatment for treating agitation in patients receiving institutional care.8,9 Quetiapine treatment was associated with greater cognitive decline than with placebo treatment, and its anticholinergic properties may contribute to poorer therapeutic response.

In addition, there is evidence in one clinical trial that neuroleptic drug treatment may actually accelerate cognitive decline and induce pathologic changes characteristic of Alzheimer’s disease.10  It is also postulated that suppression of neurotropic factor by antipsychotics may accelerate accumulation of pathologic substrates in brains of Alzheimer’s disease patients.8  

 

Memantine for Agitation and Aggression in Advanced Alzheimer’s Disease

Memantine is the first of a new class of agents for the treatment of Alzheimer’s disease acting on the glutamatergic system. Memantine is a N-methyl-D-aspartate (NMDA) receptor antagonist approved for treatment of patients with moderately severe and severe Alzheimer’s disease. Dysfunction of glutamatergic neurotransmission, manifested by neuronal excitotoxicity, is implicated in the etiology of Alzheimer’s disease. Memantine acts as a non-competitive, low potency antagonist at NMDA receptors and inhibits prolonged influx of calcium ions, causing neuronal excitotoxicity.11,12 In general, memantine therapy is well tolerated clinically because it has low potency as an NMDA receptor antagonist and differs from treatment with the more potent NMDA antagonists, which offer neuroprotective effects but often have unacceptable side effects.

The efficacy and tolerability of memantine was established in a series of placebo-controlled trials that show significant, albeit modest, therapeutic benefits in Alzheimer’s disease.13-15 Memantine treatment produces improvement in multiple domains, including global, cognitive, functional, and behavioral. A recent retrospective meta-analysis of pooled data from the efficacy trials examines outcomes in patients with agitation, aggression, or psychosis before trial entry.16 Patients who scored ≥1 on any of three Neuropsychiatric Inventory (NPI) items assessing agitation/aggression, delusions, or hallucinations within 4 weeks of entry into the trial were analyzed separately. Of the 983 patients in the total study population, 593 (60%) manifested agitation, aggressive behavior, or psychosis prior to treatment (placebo=287, memantine=306). This subgroup with pre-existing behavioral symptoms resembled the overall patient sample in demographics, Mini-Mental Status Exam scores, and symptom severity (except for NPI score).

Across the trials, 454 patients had pre-existing agitation/aggression, 336 delusions, and 172 hallucinations.13-15 Improvement on the NPI behavioral symptom cluster was significantly better with memantine than with placebo treatment at both 3 months (P=.0014) and 6 months (P=.0004). At 6 months, memantine treatment showed significant benefit compared with placebo on measures of cognition (P<.001), activities of daily living (P<.001), and clinician/caregiver impression of change in clinical status (P<.001). In addition, memantine treatment was tolerated better than placebo treatment, with fewer discontinuations from the study treatment over the 6 months. The incidence of withdrawals due to agitation and psychosis among placebo-treated patients was 3-fold higher than with memantine treatment (7.5% versus 2.6%, respectively, P<.01).

For patients randomized to placebo treatment in the trials, behaviorally disturbed patients at trial entry experienced significantly greater decline in clinical status and activities of daily living than placebo-treated patients without pre-existing symptoms. For those patients with neither prior agitation/aggressive behavior or psychosis, significantly fewer memantine-treated patients (P<.01) went on to develop behavioral symptoms during the 6 months of treatment compared with placebo, indicating preventive benefit with memantine therapy.

 

Conclusion

Behavioral disturbances and psychotic symptoms in Alzheimer’s disease are associated with rapid disease progression and increased costs of care. Although safety concerns about increased mortality and stroke and changes in product labeling have tempered their use, antipsychotics remain the mainstays of drug therapy for these symptoms of dementia in the elderly. A pooled analysis of efficacy trials of the NMDA antagonist memantine indicates that it is superior to placebo for treating and preventing behavioral symptoms in Alzheimer’s disease patients; however, the therapeutic benefit appears to be modest. PP

 

References

1.    Ferri CP, Prince M, Brayne C, et al. Global incidence of dementia: a Delphi consensus study. Lancet. 2005;366(9503):2112-2117.
2.    Schneider LS, Tariot PN, Dagerman KS, et  al. Effectiveness of atypical antipsychotics in patients with Alzheimer’s disease. N Engl J Med. 2006;355(15):1525-1538.
3.    Levy ML, Cummings JL, Fairbanks LA, et al. Longitudinal assessment of symptoms of depression, agitation, and psychosis in 181 patients with Alzheimer’s disease. Am J Psychiatry. 1996;153(11):1438-1443.
4.    Haupt M, Kurz A, Janner M. A 2-year follow-up of behavioral and psychological symptoms in Alzheimer’s disease. Dement Geriatr Cogn Disord. 2000;11(3):147-152.
5.    Murman DL, Chen Q, Powell MC, Kuo SB, Bradley CJ, Colenda CC. The incremental direct costs associated with behavioral symptoms in AD. Neurology. 2002;59(11):1721-1729.
6.    Robinson DS. Mortality risks and antipsychotics. Primary Psychiatry. 2008;15(4):21-23.
7.    Margallo-Lana M, Swann A, O’Brien J, et al. Prevalence and pharmacological management of behavioural and symptoms amongst dementia sufferers living in care environments. Int J Geriatr Psychiatry. 2001:16(1):39-44.
8.    Schneider LS, Dagerman KS, Insel P. Risk of death with atypical antipsychotic drug treatment for dementia: meta-analysis of randomized placebo-controlled trials. JAMA. 2005;294(15):1934-1943.
9.    Schneider LS, Dagerman KS, Insel  PS. Efficacy and adverse effects of atypical  antipsychotics for dementia: meta-analysis of randomized, placebo-controlled trials. Am J Geriatr Psychiatry. 2006;14:191-210.
10.    Ballard C, Margallo-Lana M, Juszczak E, et al. Quetiapine and rivastigmine and cognitive decline in Alzheimer’s disease: randomized, double-blind, placebo-controlled trial. BMJ. 2005;330(7496):874-878.
11.    Rogawski MA, Wenk GL. The neuropharmacological basis for the use of memantine in the treatment of Alzheimer’s disease. CNS Drug Rev. 2003;9(3):275-308.
12.    Lipton SA. The molecular basis of memantine action in Alzheimer’s disease and other neurologic disorders: low affinity, uncompetitive antagonism. Curr Alzheimer Res. 2005;2(2):155-165.
13.    Reisberg B, Doody R, Stöffler A, Schmitt F, Ferris S, Möbius HJ. Memantine in moderate-to-severe Alzheimer’s disease. N Engl J Med. 2003;348(14):1333-1341.
14.    Tariot PN, Farlow MR, Grossberg GT, Graham SM, McDonald S, Gergel I. Memantine treatment in patients with moderate to severe Alzheimer disease already receiving donepezil: a randomized controlled trial. JAMA. 2004;291(3):317-324.
15.    Winblad B, Poritis N. Memantine in severe dementia: results of the 9M-Best Study (Benefit and efficacy in severely demented patients during treatment with memantine). Int J Geriatr Psychiatry. 1999;14(2):135-146.
16.    Wilcock GK, Ballard CG, Cooper JA, Loft H. Memantine for agitation/aggression and psychosis in moderately severe to severe Alzheimer’s disease: a pooled analysis of 3 studies. J Clin Psychiatry. 2008;69(3):341-348.

 

e-mail: ns@mblcommunications.com

 

Dr. Sussman is editor of Primary Psychiatry and professor of psychiatry at the New York University School of Medicine in New York City.

Dr. Sussman reports no affiliation with or financial interest in any organization that may pose a conflict of interest.

 


 

An understanding of the etiology of schizophrenia has eluded theoreticians and investigators for centuries. The question of whether it is possible to recover from the disorder has also proven to be frustrating to those seeking an understanding of the true course of the illness. Three of the feature articles in this issue of Primary Psychiatry provide overviews of some of the most important recent findings about these issues.

Mark G. A. Opler, PhD, and colleagues present some of the more significant findings on schizophrenia. They note how there are multiple pathways to schizophrenia that may be reflected in neurobiologic differences, the heterogeneous clinical presentation of the disease, and in differential responses to treatment. Several findings about factors that increase risk have been confirmed. These include genes, particularly the evidence for genetic associations and the function of suspected susceptibility genes; advanced paternal age and potential mechanisms by which it exerts its influence on pathology; and selected environmental exposures, such as chemicals and poor nutrition. This article also reviews likely gene-gene and gene-environment interactions.

Cannabis, or marijuana, is the most widely used illegal drug in the United States, with nearly 45% of teenagers in the US having smoked cannabis before graduation from high school. Smoking cannabis is also common among young adults. It is viewed by many as a relatively benign recreational drug, but compelling evidence has implicated cannabis as a possible cause of schizophrenia. Despite the social acceptance of cannabis use, in part because there is a pervasive belief that cannabis use is benign, cannabis use can lead to psychosis. Lauren L. Bodkin, PsyD, and colleagues describe what may make some teenagers vulnerable to psychosis in the context of cannabis use, considers motivations for their use, and makes recommendations for treatment approaches to be used by clinicians, as based on the existing literature. They describe a particularly vulnerable subset of youths who possess a genetic variation that manifests in particular behaviors and experiences, including schizotypy. Apart from the psychiatric dimension of chronic cannabis use, the authors note, it has been estimated that smoking five joints/day may be equivalent to smoking one pack of cigarettes/day in terms of exposure to cancer-causing chemicals. In addition to outlining the varied risks associated with cannabis use, the article contains useful guidelines for intervention when clinicians encounter patients at elevated risk.

Paul H. Lysaker, PhD, and Kelly D. Buck, APRN, BC, summarize the results of data from multiple sources and observe that many psychiatric and general practitioners remain unaware that most people with schizophrenia will achieve significant periods of recovery during their lives. The authors note that while these data are grounds for optimism, the idea of recovery has been received with resistance and as an evolving concept it has yet to be defined in an agreed upon matter. Progressive deterioration was long considered a hallmark of schizophrenia, but evidence suggests that this is more the exception than the rule. Examples of recovery as a process include the resolution of problems associated with the illness, the development of an optimistic outlook on life, and the development of a sense of worth and intrinsic value. The article clarifies the concept of recovery and its implications for practice, and offers a review of definitions, operational criteria, and studies of the incidence and correlates of recovery from schizophrenia. They conclude with a review of clinical practices that might be employed to promote recovery. Even though gains are often followed by losses and relapse, the authors argue that these may become opportunities for insight and personal growth.

Mark Zimmerman, MD, and colleagues note that to determine the impact of treatment in clinical practice it is necessary to evaluate outcome. At the moment, assessments of outcome are typically based on unstructured interactions that yield unquantified judgments of progress. Even among psychiatrists, use of standardized scales to monitor outcome is rare. The authors explain why available self-report questionnaires are a cost-effective option to monitor outcome. They state that standardized scales should be routinely used to measure outcome when treating depression and that this should be the standard of care. They conclude with a challenge to readers who are not convinced by their arguments and who do not adopt a measurement-based approach toward treating depression. PP