These programs combine individual patient visits with a group hands-on experience, education, and peer support.
Clinicians and researchers who specialize in eczema and atopic dermatitis (AD) know that in some cases the itch associated with these conditions is so insidious that it can negatively impact every aspect of a patient’s life from school, to play, to work, to sleep; and that when it disrupts the sleep cycle—especially in combination with all of those other effects—emotional distress can ensue.
Eczema expert and dermatologist Gil Yosipovitch, MD, wanted to do something more than is typically done in the conventional clinic setting to help these patients who endure the relentless effects of AD itch. He borrowed a page from German clinicians who developed an educational program specifically designed to ease the burden of eczema patients and caregivers.1 In Germany, a task force on educational programs for atopic eczema (AGNES, Arbeitsgemeinschaft Neurodermitisschulung) for children, teenagers, and parents was launched, and later a multicenter, randomized controlled clinical study found that education programs improve the ability to cope with AD in children and their parents.2,3 This model inspired Dr Yosipovitch to found a similar program, which he called “The Coping School.” This initiative made him the first US physician to introduce an educational program for AD patients and their caregivers to help them cope with chronic itch.
Approximately 40 patients and family members participated in the program. He offered The Coping School at Temple University where he was previously the chairman of the department of dermatology. While at Temple, he directed the first translational, clinical, and research center dedicated to the study of chronic itch in the United States.
Education and Support
“We offered this education program to interested patients with AD and their families. The program comprised 3-weekly, 2-hour sessions that addressed proper skin care led by a professional team consisting of a dermatologist, a psychologist, a nutritionist, and a nurse practitioner,” explained Dr Yosipovitch, who is the director of The Itch Center at the University of Miami Miller School of Medicine.
He noted that he received positive feedback from the patients and families who participated in the educational and coping support program at Temple, and he is making inroads into starting a similar program in Miami. “We do a good job of raising awareness of AD among our colleagues, but we need to address itch and explain its widespread effects. That is why a lot of my publications deal with how to assess itch in a clinical setting, and how to understand and help the patients in terms of coping with itch,” he said. “It’s important that our colleagues know that [itch treatment] is not just about medication; it’s also about relaxation techniques because stress plays an important role in aggravating itch. Identifying stress reduction techniques that work, and introducing them to our patients really helps,” he explained.
Similar Programs
Dr Yosipovitch planted the seed, now other programs are sprouting up across the country. The Dermatologist spoke with professionals who are facilitating these programs, and the consensus is that patients welcome the help. For instance, at Boston University School of Medicine, the director of pediatric dermatology, Margaret Lee, MD, PhD, is in charge of the AD PEER Clinic (Peer Education, Empowerment and Resilience Clinic). Prior to that, she ran an AD educational program at Boston Children’s Hospital.
Dr Lee combined individual patient visits with a group hands-on experience and group education and peer support. “Generally, patients would attend 2 consecutive sessions, ideally 2 weeks apart so that everyone could see how others in the same group did after 2 weeks,” she explained.
Families could feel various over-the-counter topicals, try wrap strategies, and take home samples; new participants got educational materials, and everyone had an opportunity for discussion (Figure).
At Boston Medical Center, the program will start with monthly sessions, attended by Dr Lee, and a dermatology nurse; and there are plans to include a collaborating pediatric psychologist in the near future.
“I would love to have an allergist and nutritionist regularly participating in select sessions, as well,” said Dr Lee.
Benefits and Challenges
Improved compliance is among the benefits associated with these programs, according to Dr Lee. “Thoroughly educating patients and families about why they must do what we advise, and developing individualized strategies is associated with improved compliance. I think it also helps to have a lot of hands-on teaching and exposure to various skin care products because this improves confidence, which improves compliance, and is less expensive and frustrating than trial and error at home,” she explained.
There are also numerous challenges to starting these programs, which is why there are not more of them. “Clinics and hospitals aren’t designed for group visits, and certainly not for individual-group clinics like mine, where several private clinic rooms are found in close proximity to a room large enough to accommodate several families, supplies, and staff,” said Dr Lee.
What’s more, the startup time and expertise required to develop and run new programs is significant, and naturally there are budgetary issues. “I don’t get paid for participating in the group portion of the clinics, but I can still be enthusiastic about my time being well spent because I learn so much about my patients in the group setting; it strengthens our therapeutic alliance and optimizes their care,” she explained.
Other hurdles that block the way to a proliferation of AD education programs, according to Dr Lee, include the fact that it is difficult to design programs that do not conflict with school and work schedules, for patients and their parents/guardians, respectively. “The European eczema school studies describe multiple 2-hour-plus weekly programs that my American colleagues and I find very difficult to replicate,” said Dr Lee.
That said, she believes in the benefits of the model and is dedicated to her fledgling Boston University program. For now, the new group will remain pediatric only, however, she said if logistics and interest support it she aims to offer an adult version in the future.
Article continues on page 2
{{pagebreak}}
Satisfaction with the program was high, according to Dr Lee. For instance, 100% of respondents in the pilot satisfaction/improvement surveys said they would recommend the clinic to other families. One parent commented that the program has been life changing for her son because it gave him a chance to interact with peers. He had not had much of an opportunity for that previously because the extent of his itch/rash forced him to be homeschooled.
“In the teen/young adult group, the parents would leave after a little while—and talk with each other in the waiting area—while we focused on coping and social experiences such as body confidence, sports despite rashes, bullying, and dating,” said Dr Lee.
The program emphasizes that patients and their families must be collaborators in multidisciplinary care and self-care, which engenders a sense of empowerment, explained Dr Lee. “It’s extremely effective when they directly share their skin care and coping tips with their peers. Peer influence is powerful in pediatrics—whether it’s positive or negative peer pressure—so it makes sense that skin care strategies are better reinforced by peers than by AD experts. It’s also really helpful for these kids to know they’re not the only one with eczema, and for parents to know they’re not the only ones awake at night with their itchy kid,” said Dr Lee.
An Online Program
Another innovative educational support program aimed at improving the quality of life of people troubled by AD-associated itch is being held where so many find themselves increasingly at ease today: online. The program, which is sponsored by Pfizer and Fox Chase Cancer Center, in Philadelphia, is run by Carolyn Heckman, PhD, who is collaborating with Dr Yosipovitch.
“He came up with the idea to do this because he sees so many patients with chronic itch who have a hard time managing, and felt like patients need more support and access to support and that they would be interested in a web intervention,” explained Dr Heckman.
The website is in the early stages of development. Once the program is up and running, they plan to perform a pilot study to see if users of the site have experienced any changes in their itch-related quality of life. “The aim is to get about 100 patients for the pilot study, and then, based on those results, we would design a larger trial comparing the website to something else [to be determined],” said Dr Heckman, associate professor of Cancer Prevention and Control Program at Fox Chase Cancer Center.
Dr Heckman is a behavioral scientist, a psychologist by training, who has done research on skin cancer focusing on skin cancer prevention. She recently developed a web intervention program to get young adults to reduce their UV exposure and increase their skin protection, and that experience translated well to making her an ideal candidate to head up the AD project.
“It seemed like this would be a good fit for me because I have experience in a dermatology-related area, as well as in behavior change and online intervention,” she said. “There are a lot of opportunities to try new things and the potential to make a real difference because so many people suffer from psoriasis and eczema and chronic itch,” she added.
The online intervention includes education about eczema, psoriasis, itch, itch management, and coping skills. “Coping skills are so important here because stress is closely related to itch. Greater stress can lead to greater itch, greater itch can lead to greater stress,” she explained. Additionally, she said, “We are hoping that patients will get better at understanding their itch and cope better with it and perhaps use some strategies gleaned from the site to manage their itch better. For instance, if they learn about simple things like changing their bathing practices or moisturizing practices it might help them feel better.”
Dr Heckman pointed out that there is a lack of understanding and a significant amount of undertreatment among AD patients, and that perhaps making information and support available via a widely accessible medium might be helpful. “Some of these patients don’t have access to a primary care provider, some do not have access to a dermatologist, some are not seeking care at all or are not spending enough time with a health care provider to get the kind of attention that is needed given the chronic nature of AD-associated itch,” she said. (If you would like to see if you are eligible for the online program, go to www.ItchRelief4Me.com.)
The Future
Out of the box education whether in the form of clinic-based support groups or targeted online programs are increasingly filling a need that addresses today’s patients desire to be involved in the treatment decision-making model.
Dr Yosipovitch noted, “We have found that this type of approach of shared decision making is becoming an important topic in health care. Many patients do not only want to be fully informed about their diagnosis, but also prefer to be involved in the decision on the treatment of their disease. The dermatology field has only recently started adopting this concept, which is why few departments in the United States have initiated these programs so far.”
He added that the service is free of charge, which may be a deterrent for-profit medical institutions signing on. For instance, he explained, in the case of initiating a Coping School at the University of Miami Miller School of Medicine, he needs to carve out the time in his own schedule to plan the program, get buy-in from the administration, and acquire the necessary funding to move forward. Despite these challenges, he said, “We are getting there.”
References
1. Ersser SJ, Cowdell F, Latter S, et al. Psychological and educational interventions for atopic eczema in children. Cochrane Database Syst Rev. 2014;(1):CD004054. doi:10.1002/14651858.CD004054.pub3
2. Weisshar E, Diepgen TL, Brucknu T. Itch intensity evaluated in the German Atopic Dermatitis Intervention Study (GADIS): correlation with quality of life, coping behavior and SCORAD severity in 823 children. Acta Derm Venercol. 2008;88(3):234-239.
3. Kupfer J, Gieler U, Diepgen TL. Structural education program improves the coping with atopic dermatitis in children and their parents–a multicenter randomized, controlled trial. J Psychosom Res. 2010;68(4):353-358.
These programs combine individual patient visits with a group hands-on experience, education, and peer support.
Clinicians and researchers who specialize in eczema and atopic dermatitis (AD) know that in some cases the itch associated with these conditions is so insidious that it can negatively impact every aspect of a patient’s life from school, to play, to work, to sleep; and that when it disrupts the sleep cycle—especially in combination with all of those other effects—emotional distress can ensue.
Eczema expert and dermatologist Gil Yosipovitch, MD, wanted to do something more than is typically done in the conventional clinic setting to help these patients who endure the relentless effects of AD itch. He borrowed a page from German clinicians who developed an educational program specifically designed to ease the burden of eczema patients and caregivers.1 In Germany, a task force on educational programs for atopic eczema (AGNES, Arbeitsgemeinschaft Neurodermitisschulung) for children, teenagers, and parents was launched, and later a multicenter, randomized controlled clinical study found that education programs improve the ability to cope with AD in children and their parents.2,3 This model inspired Dr Yosipovitch to found a similar program, which he called “The Coping School.” This initiative made him the first US physician to introduce an educational program for AD patients and their caregivers to help them cope with chronic itch.
Approximately 40 patients and family members participated in the program. He offered The Coping School at Temple University where he was previously the chairman of the department of dermatology. While at Temple, he directed the first translational, clinical, and research center dedicated to the study of chronic itch in the United States.
Education and Support
“We offered this education program to interested patients with AD and their families. The program comprised 3-weekly, 2-hour sessions that addressed proper skin care led by a professional team consisting of a dermatologist, a psychologist, a nutritionist, and a nurse practitioner,” explained Dr Yosipovitch, who is the director of The Itch Center at the University of Miami Miller School of Medicine.
He noted that he received positive feedback from the patients and families who participated in the educational and coping support program at Temple, and he is making inroads into starting a similar program in Miami. “We do a good job of raising awareness of AD among our colleagues, but we need to address itch and explain its widespread effects. That is why a lot of my publications deal with how to assess itch in a clinical setting, and how to understand and help the patients in terms of coping with itch,” he said. “It’s important that our colleagues know that [itch treatment] is not just about medication; it’s also about relaxation techniques because stress plays an important role in aggravating itch. Identifying stress reduction techniques that work, and introducing them to our patients really helps,” he explained.
Similar Programs
Dr Yosipovitch planted the seed, now other programs are sprouting up across the country. The Dermatologist spoke with professionals who are facilitating these programs, and the consensus is that patients welcome the help. For instance, at Boston University School of Medicine, the director of pediatric dermatology, Margaret Lee, MD, PhD, is in charge of the AD PEER Clinic (Peer Education, Empowerment and Resilience Clinic). Prior to that, she ran an AD educational program at Boston Children’s Hospital.
Dr Lee combined individual patient visits with a group hands-on experience and group education and peer support. “Generally, patients would attend 2 consecutive sessions, ideally 2 weeks apart so that everyone could see how others in the same group did after 2 weeks,” she explained.
Families could feel various over-the-counter topicals, try wrap strategies, and take home samples; new participants got educational materials, and everyone had an opportunity for discussion (Figure).
At Boston Medical Center, the program will start with monthly sessions, attended by Dr Lee, and a dermatology nurse; and there are plans to include a collaborating pediatric psychologist in the near future.
“I would love to have an allergist and nutritionist regularly participating in select sessions, as well,” said Dr Lee.
Benefits and Challenges
Improved compliance is among the benefits associated with these programs, according to Dr Lee. “Thoroughly educating patients and families about why they must do what we advise, and developing individualized strategies is associated with improved compliance. I think it also helps to have a lot of hands-on teaching and exposure to various skin care products because this improves confidence, which improves compliance, and is less expensive and frustrating than trial and error at home,” she explained.
There are also numerous challenges to starting these programs, which is why there are not more of them. “Clinics and hospitals aren’t designed for group visits, and certainly not for individual-group clinics like mine, where several private clinic rooms are found in close proximity to a room large enough to accommodate several families, supplies, and staff,” said Dr Lee.
What’s more, the startup time and expertise required to develop and run new programs is significant, and naturally there are budgetary issues. “I don’t get paid for participating in the group portion of the clinics, but I can still be enthusiastic about my time being well spent because I learn so much about my patients in the group setting; it strengthens our therapeutic alliance and optimizes their care,” she explained.
Other hurdles that block the way to a proliferation of AD education programs, according to Dr Lee, include the fact that it is difficult to design programs that do not conflict with school and work schedules, for patients and their parents/guardians, respectively. “The European eczema school studies describe multiple 2-hour-plus weekly programs that my American colleagues and I find very difficult to replicate,” said Dr Lee.
That said, she believes in the benefits of the model and is dedicated to her fledgling Boston University program. For now, the new group will remain pediatric only, however, she said if logistics and interest support it she aims to offer an adult version in the future.
Article continues on page 2
{{pagebreak}}
Satisfaction with the program was high, according to Dr Lee. For instance, 100% of respondents in the pilot satisfaction/improvement surveys said they would recommend the clinic to other families. One parent commented that the program has been life changing for her son because it gave him a chance to interact with peers. He had not had much of an opportunity for that previously because the extent of his itch/rash forced him to be homeschooled.
“In the teen/young adult group, the parents would leave after a little while—and talk with each other in the waiting area—while we focused on coping and social experiences such as body confidence, sports despite rashes, bullying, and dating,” said Dr Lee.
The program emphasizes that patients and their families must be collaborators in multidisciplinary care and self-care, which engenders a sense of empowerment, explained Dr Lee. “It’s extremely effective when they directly share their skin care and coping tips with their peers. Peer influence is powerful in pediatrics—whether it’s positive or negative peer pressure—so it makes sense that skin care strategies are better reinforced by peers than by AD experts. It’s also really helpful for these kids to know they’re not the only one with eczema, and for parents to know they’re not the only ones awake at night with their itchy kid,” said Dr Lee.
An Online Program
Another innovative educational support program aimed at improving the quality of life of people troubled by AD-associated itch is being held where so many find themselves increasingly at ease today: online. The program, which is sponsored by Pfizer and Fox Chase Cancer Center, in Philadelphia, is run by Carolyn Heckman, PhD, who is collaborating with Dr Yosipovitch.
“He came up with the idea to do this because he sees so many patients with chronic itch who have a hard time managing, and felt like patients need more support and access to support and that they would be interested in a web intervention,” explained Dr Heckman.
The website is in the early stages of development. Once the program is up and running, they plan to perform a pilot study to see if users of the site have experienced any changes in their itch-related quality of life. “The aim is to get about 100 patients for the pilot study, and then, based on those results, we would design a larger trial comparing the website to something else [to be determined],” said Dr Heckman, associate professor of Cancer Prevention and Control Program at Fox Chase Cancer Center.
Dr Heckman is a behavioral scientist, a psychologist by training, who has done research on skin cancer focusing on skin cancer prevention. She recently developed a web intervention program to get young adults to reduce their UV exposure and increase their skin protection, and that experience translated well to making her an ideal candidate to head up the AD project.
“It seemed like this would be a good fit for me because I have experience in a dermatology-related area, as well as in behavior change and online intervention,” she said. “There are a lot of opportunities to try new things and the potential to make a real difference because so many people suffer from psoriasis and eczema and chronic itch,” she added.
The online intervention includes education about eczema, psoriasis, itch, itch management, and coping skills. “Coping skills are so important here because stress is closely related to itch. Greater stress can lead to greater itch, greater itch can lead to greater stress,” she explained. Additionally, she said, “We are hoping that patients will get better at understanding their itch and cope better with it and perhaps use some strategies gleaned from the site to manage their itch better. For instance, if they learn about simple things like changing their bathing practices or moisturizing practices it might help them feel better.”
Dr Heckman pointed out that there is a lack of understanding and a significant amount of undertreatment among AD patients, and that perhaps making information and support available via a widely accessible medium might be helpful. “Some of these patients don’t have access to a primary care provider, some do not have access to a dermatologist, some are not seeking care at all or are not spending enough time with a health care provider to get the kind of attention that is needed given the chronic nature of AD-associated itch,” she said. (If you would like to see if you are eligible for the online program, go to www.ItchRelief4Me.com.)
The Future
Out of the box education whether in the form of clinic-based support groups or targeted online programs are increasingly filling a need that addresses today’s patients desire to be involved in the treatment decision-making model.
Dr Yosipovitch noted, “We have found that this type of approach of shared decision making is becoming an important topic in health care. Many patients do not only want to be fully informed about their diagnosis, but also prefer to be involved in the decision on the treatment of their disease. The dermatology field has only recently started adopting this concept, which is why few departments in the United States have initiated these programs so far.”
He added that the service is free of charge, which may be a deterrent for-profit medical institutions signing on. For instance, he explained, in the case of initiating a Coping School at the University of Miami Miller School of Medicine, he needs to carve out the time in his own schedule to plan the program, get buy-in from the administration, and acquire the necessary funding to move forward. Despite these challenges, he said, “We are getting there.”
References
1. Ersser SJ, Cowdell F, Latter S, et al. Psychological and educational interventions for atopic eczema in children. Cochrane Database Syst Rev. 2014;(1):CD004054. doi:10.1002/14651858.CD004054.pub3
2. Weisshar E, Diepgen TL, Brucknu T. Itch intensity evaluated in the German Atopic Dermatitis Intervention Study (GADIS): correlation with quality of life, coping behavior and SCORAD severity in 823 children. Acta Derm Venercol. 2008;88(3):234-239.
3. Kupfer J, Gieler U, Diepgen TL. Structural education program improves the coping with atopic dermatitis in children and their parents–a multicenter randomized, controlled trial. J Psychosom Res. 2010;68(4):353-358.
These programs combine individual patient visits with a group hands-on experience, education, and peer support.
Clinicians and researchers who specialize in eczema and atopic dermatitis (AD) know that in some cases the itch associated with these conditions is so insidious that it can negatively impact every aspect of a patient’s life from school, to play, to work, to sleep; and that when it disrupts the sleep cycle—especially in combination with all of those other effects—emotional distress can ensue.
Eczema expert and dermatologist Gil Yosipovitch, MD, wanted to do something more than is typically done in the conventional clinic setting to help these patients who endure the relentless effects of AD itch. He borrowed a page from German clinicians who developed an educational program specifically designed to ease the burden of eczema patients and caregivers.1 In Germany, a task force on educational programs for atopic eczema (AGNES, Arbeitsgemeinschaft Neurodermitisschulung) for children, teenagers, and parents was launched, and later a multicenter, randomized controlled clinical study found that education programs improve the ability to cope with AD in children and their parents.2,3 This model inspired Dr Yosipovitch to found a similar program, which he called “The Coping School.” This initiative made him the first US physician to introduce an educational program for AD patients and their caregivers to help them cope with chronic itch.
Approximately 40 patients and family members participated in the program. He offered The Coping School at Temple University where he was previously the chairman of the department of dermatology. While at Temple, he directed the first translational, clinical, and research center dedicated to the study of chronic itch in the United States.
Education and Support
“We offered this education program to interested patients with AD and their families. The program comprised 3-weekly, 2-hour sessions that addressed proper skin care led by a professional team consisting of a dermatologist, a psychologist, a nutritionist, and a nurse practitioner,” explained Dr Yosipovitch, who is the director of The Itch Center at the University of Miami Miller School of Medicine.
He noted that he received positive feedback from the patients and families who participated in the educational and coping support program at Temple, and he is making inroads into starting a similar program in Miami. “We do a good job of raising awareness of AD among our colleagues, but we need to address itch and explain its widespread effects. That is why a lot of my publications deal with how to assess itch in a clinical setting, and how to understand and help the patients in terms of coping with itch,” he said. “It’s important that our colleagues know that [itch treatment] is not just about medication; it’s also about relaxation techniques because stress plays an important role in aggravating itch. Identifying stress reduction techniques that work, and introducing them to our patients really helps,” he explained.
Similar Programs
Dr Yosipovitch planted the seed, now other programs are sprouting up across the country. The Dermatologist spoke with professionals who are facilitating these programs, and the consensus is that patients welcome the help. For instance, at Boston University School of Medicine, the director of pediatric dermatology, Margaret Lee, MD, PhD, is in charge of the AD PEER Clinic (Peer Education, Empowerment and Resilience Clinic). Prior to that, she ran an AD educational program at Boston Children’s Hospital.
Dr Lee combined individual patient visits with a group hands-on experience and group education and peer support. “Generally, patients would attend 2 consecutive sessions, ideally 2 weeks apart so that everyone could see how others in the same group did after 2 weeks,” she explained.
Families could feel various over-the-counter topicals, try wrap strategies, and take home samples; new participants got educational materials, and everyone had an opportunity for discussion (Figure).
At Boston Medical Center, the program will start with monthly sessions, attended by Dr Lee, and a dermatology nurse; and there are plans to include a collaborating pediatric psychologist in the near future.
“I would love to have an allergist and nutritionist regularly participating in select sessions, as well,” said Dr Lee.
Benefits and Challenges
Improved compliance is among the benefits associated with these programs, according to Dr Lee. “Thoroughly educating patients and families about why they must do what we advise, and developing individualized strategies is associated with improved compliance. I think it also helps to have a lot of hands-on teaching and exposure to various skin care products because this improves confidence, which improves compliance, and is less expensive and frustrating than trial and error at home,” she explained.
There are also numerous challenges to starting these programs, which is why there are not more of them. “Clinics and hospitals aren’t designed for group visits, and certainly not for individual-group clinics like mine, where several private clinic rooms are found in close proximity to a room large enough to accommodate several families, supplies, and staff,” said Dr Lee.
What’s more, the startup time and expertise required to develop and run new programs is significant, and naturally there are budgetary issues. “I don’t get paid for participating in the group portion of the clinics, but I can still be enthusiastic about my time being well spent because I learn so much about my patients in the group setting; it strengthens our therapeutic alliance and optimizes their care,” she explained.
Other hurdles that block the way to a proliferation of AD education programs, according to Dr Lee, include the fact that it is difficult to design programs that do not conflict with school and work schedules, for patients and their parents/guardians, respectively. “The European eczema school studies describe multiple 2-hour-plus weekly programs that my American colleagues and I find very difficult to replicate,” said Dr Lee.
That said, she believes in the benefits of the model and is dedicated to her fledgling Boston University program. For now, the new group will remain pediatric only, however, she said if logistics and interest support it she aims to offer an adult version in the future.
Article continues on page 2
{{pagebreak}}
Satisfaction with the program was high, according to Dr Lee. For instance, 100% of respondents in the pilot satisfaction/improvement surveys said they would recommend the clinic to other families. One parent commented that the program has been life changing for her son because it gave him a chance to interact with peers. He had not had much of an opportunity for that previously because the extent of his itch/rash forced him to be homeschooled.
“In the teen/young adult group, the parents would leave after a little while—and talk with each other in the waiting area—while we focused on coping and social experiences such as body confidence, sports despite rashes, bullying, and dating,” said Dr Lee.
The program emphasizes that patients and their families must be collaborators in multidisciplinary care and self-care, which engenders a sense of empowerment, explained Dr Lee. “It’s extremely effective when they directly share their skin care and coping tips with their peers. Peer influence is powerful in pediatrics—whether it’s positive or negative peer pressure—so it makes sense that skin care strategies are better reinforced by peers than by AD experts. It’s also really helpful for these kids to know they’re not the only one with eczema, and for parents to know they’re not the only ones awake at night with their itchy kid,” said Dr Lee.
An Online Program
Another innovative educational support program aimed at improving the quality of life of people troubled by AD-associated itch is being held where so many find themselves increasingly at ease today: online. The program, which is sponsored by Pfizer and Fox Chase Cancer Center, in Philadelphia, is run by Carolyn Heckman, PhD, who is collaborating with Dr Yosipovitch.
“He came up with the idea to do this because he sees so many patients with chronic itch who have a hard time managing, and felt like patients need more support and access to support and that they would be interested in a web intervention,” explained Dr Heckman.
The website is in the early stages of development. Once the program is up and running, they plan to perform a pilot study to see if users of the site have experienced any changes in their itch-related quality of life. “The aim is to get about 100 patients for the pilot study, and then, based on those results, we would design a larger trial comparing the website to something else [to be determined],” said Dr Heckman, associate professor of Cancer Prevention and Control Program at Fox Chase Cancer Center.
Dr Heckman is a behavioral scientist, a psychologist by training, who has done research on skin cancer focusing on skin cancer prevention. She recently developed a web intervention program to get young adults to reduce their UV exposure and increase their skin protection, and that experience translated well to making her an ideal candidate to head up the AD project.
“It seemed like this would be a good fit for me because I have experience in a dermatology-related area, as well as in behavior change and online intervention,” she said. “There are a lot of opportunities to try new things and the potential to make a real difference because so many people suffer from psoriasis and eczema and chronic itch,” she added.
The online intervention includes education about eczema, psoriasis, itch, itch management, and coping skills. “Coping skills are so important here because stress is closely related to itch. Greater stress can lead to greater itch, greater itch can lead to greater stress,” she explained. Additionally, she said, “We are hoping that patients will get better at understanding their itch and cope better with it and perhaps use some strategies gleaned from the site to manage their itch better. For instance, if they learn about simple things like changing their bathing practices or moisturizing practices it might help them feel better.”
Dr Heckman pointed out that there is a lack of understanding and a significant amount of undertreatment among AD patients, and that perhaps making information and support available via a widely accessible medium might be helpful. “Some of these patients don’t have access to a primary care provider, some do not have access to a dermatologist, some are not seeking care at all or are not spending enough time with a health care provider to get the kind of attention that is needed given the chronic nature of AD-associated itch,” she said. (If you would like to see if you are eligible for the online program, go to www.ItchRelief4Me.com.)
The Future
Out of the box education whether in the form of clinic-based support groups or targeted online programs are increasingly filling a need that addresses today’s patients desire to be involved in the treatment decision-making model.
Dr Yosipovitch noted, “We have found that this type of approach of shared decision making is becoming an important topic in health care. Many patients do not only want to be fully informed about their diagnosis, but also prefer to be involved in the decision on the treatment of their disease. The dermatology field has only recently started adopting this concept, which is why few departments in the United States have initiated these programs so far.”
He added that the service is free of charge, which may be a deterrent for-profit medical institutions signing on. For instance, he explained, in the case of initiating a Coping School at the University of Miami Miller School of Medicine, he needs to carve out the time in his own schedule to plan the program, get buy-in from the administration, and acquire the necessary funding to move forward. Despite these challenges, he said, “We are getting there.”
References
1. Ersser SJ, Cowdell F, Latter S, et al. Psychological and educational interventions for atopic eczema in children. Cochrane Database Syst Rev. 2014;(1):CD004054. doi:10.1002/14651858.CD004054.pub3
2. Weisshar E, Diepgen TL, Brucknu T. Itch intensity evaluated in the German Atopic Dermatitis Intervention Study (GADIS): correlation with quality of life, coping behavior and SCORAD severity in 823 children. Acta Derm Venercol. 2008;88(3):234-239.
3. Kupfer J, Gieler U, Diepgen TL. Structural education program improves the coping with atopic dermatitis in children and their parents–a multicenter randomized, controlled trial. J Psychosom Res. 2010;68(4):353-358.
