Jennifer LeBovidge, PhD is a clinical psychologist in the Atopic Dermatitis Center at Boston Children’s Hospital and Assistant Professor of Psychology in the Department of Psychiatry at Harvard Medical School. Today, we’re discussing her recent study, “Improving patient education for atopic dermatitis: A randomized controlled trial of a caregiver handbook”1.
How can the educational handbook play a role in improving AD symptoms, caregiver confidence in AD management skills, and AD‐related quality of life?
We know that AD has a huge effect on patient and family quality of life in terms of distressing itch, sleep disruption, impact on self-esteem, and mental health comorbidities. There is also a lot of burden related to managing the disease. Patients and families are responsible for doing most of the management at home in terms of day-to-day skincare, trigger avoidance, and monitoring symptoms to adapt care based on the condition of the skin. Patients and families often tell us they feel desperate to find a way to better control the disease.
In the Atopic Dermatitis Center at Boston Children's Hospital, we use an interdisciplinary approach to treating children and adolescents with moderate-to-severe AD. The cornerstone of our program is comprehensive patient education. We often say that we're not necessarily giving families treatment options beyond what they've received from other health care providers, but that we have the benefit of extra time to spend with families to make sure that they understand the disease, its course, and the rationale for all of the treatments we’re recommending. We can address a lot of families’ questions and worries about side effects and triggers and make sure they understand the practical details needed to carry out the skincare routine in daily life. As a psychologist, my role in AD education often involves strategies to manage itch-scratch cycle, improve sleep, and involve the child in their care in developmentally appropriate ways.
We know, however, that the time allotted for most health care visits for AD isn’t enough for comprehensive education. That was the inspiration behind development of our educational handbook. We wanted to create an evidence-based and cost-effective resource with information needed to manage and cope with AD - for use both within our hospital and to be freely available for families and health care providers beyond Boston Children’s. We worked with specialists in health care communication within our hospital, to make the handbook accessible to families with a wide range of health literacy skills. Our hope was that this educational tool would reinforce and build upon information provided in health care visits by giving families practical treatment and coping tips to build confidence in AD care.
According to the study, the handbook did not improve AD symptoms more than standard management alone, but despite that, a majority of caregivers rated the handbook as helpful in managing the child's AD. Why do you think that is?
We can't say for sure why the handbook didn't improve AD symptoms more than the standard management alone. We did see a greater absolute improvement in AD symptoms for families receiving the handbook, but this was not statistically significant. There are many factors affecting the condition of the skin at any time. Perhaps with a larger sample size or multiple assessment points, given fluctuations in AD symptoms, we would have seen a difference. However, we don’t really know if that is the case.
What we did see was that for caregivers of children attending an initial appointment for AD care at our hospital, those who received the handbook reported greater increases in their confidence in managing the child’s AD than those who did not get the handbook. As for why the handbook increased confidence, it may help to look at some of the open-ended comments we collected from caregivers in our study about their experience with the handbook. We saw some pretty consistent themes. Caregivers liked the clear instructions and graphics about how to carry out skincare. There were comments about the handbook increasing caregivers’ confidence that they were completing skincare properly and safely. Others reported that they benefited from having a resource to refer back to for questions, since it can be easy to miss things during the visit with the healthcare provider.
We also think that the handbook can counter some of the temptation to consult “Dr. Google” when families are not sure of how best to manage AD. Some families indicated that it was helpful to have a trusted resource, instead of having to go online and try to sort out what is credible.
The study noted that study completers were highly educated and primarily white and non‐Hispanic, with patients lost to follow‐up more likely to be African American or Hispanic. Going forward, what can dermatologists do to evaluate AD educational resources among diverse groups of patients/caregivers?
Unfortunately we don’t know what factors were associated with higher loss to follow-up for Black and Hispanic families in this study. This is a critical issue, given disparities in risk for AD, access to AD care, and clinical outcomes. As we develop additional educational tools, it will be important to involve a diverse group of families across all stages of resource development, to make sure resources are meaningful for the families we serve. Early on, this should include involving families as stakeholders to understand their needs, as well as having them review materials along the way, to ensure they are culturally sensitive and relevant. For this particular study, there may have been barriers to online or phone completion of the follow-up survey, for those families who were not seen in clinic at the 3-month follow-up visit. In the future, it may help to consider more flexible options for research completion, as well as partnering actively with families’ healthcare providers to engage families in our research so that their perspectives are heard. It’s also important to keep in mind that this study was conducted with English-speaking families. Although we do have the handbook translated into Spanish and Arabic, our research design limits generalization of findings to a broader population of families of children with AD.
In the conclusion it’s mentioned that the handbook may be a valuable resource for caregivers of children who are newly diagnosed with AD. Could it be a valuable resource for more experienced caregivers?
I definitely believe the handbook can be a very valuable resource for more experienced caregivers. We know, from our clinical experience, that many families come to us having been struggling to manage the child’s AD for some time. Education is an ongoing process for sure. We found that about 80 percent of our sample reported going back to the handbook to re-read sections. In the handbook, we provide suggestions for engaging children in skincare and managing itching and scratching at different ages, as well as provide support around the emotional side of coping with AD, which we hope will be valuable for families over time.
In terms of the particular benefit of the handbook for families who are new to managing AD, new families referenced the convenience of being able to refer back to the handbook as needed, because it is easy to get overwhelmed and inundated by information during the visit with the health care provider. Families with more experience in managing AD commented that their journey would have been easier if they had a comprehensive educational resource earlier on in the child’s disease course.
What are some pearls of wisdom you’d like to share with your colleagues regarding pediatric AD, and the handbook?
The most important message to communicate is that we understand that the handbook is just a tool. We think it's a very useful tool, but only one part of the educational process. Helping families successfully manage AD means engaging them in shared decision making about their particular goals, preferences, and challenges related to disease management. When we conducted this study, we didn’t evaluate use of the handbook as a teaching tool during clinical visits, which would have been harder to standardize. However, in clinical practice, we have surveyed some of our dermatologists and allergists about their experience using the handbook. Some of the comments indicate that providers do use diagrams from the handbook during visits, or point families to particular sections of the handbook, while also engaging in problem-solving and decision making to meet the particular families’ needs.
Reference:
- LeBovidge JS, Timmons K, Delano S, et al. Improving patient education for atopic dermatitis: A randomized controlled trial of a caregiver handbook. Pediatr Dermatol. 2021;38(2):396-404. doi:10.1111/pde.14519
