Graft versus host disease (GVHD) is a complex systemic disease which is associated with signi cant physical and psychological distress in patients. Given the complexity of this disorder, navigation of educational information available to patients can be quite daunting. However, the availability of patient materials plays a vital role in a patient's ability to navigate and manage such a di cult diagnosis. Speci cally, patient education has been shown to reduce the uncertainty and stress that follows such a complex diagnosis, but to our knowledge no studies have evaluated the content of patient education materials on GVHD, especially from a dermatologic perspective. Despite the complexity of GVHD, cutaneous manifestations are common and often require management by dermatology. In this crosssectional study, a Google search engine was utilized to assess websites for information on GVHD etiology, pathophysiology, symptoms, treatment, coverage of Acute GVHD, Chronic GVHD, cutaneous presentations, dermatologic management, and quality of life implications. It was evident that there was a paucity of information speci c to the cutaneous manifestations and dermatologic management of GVHD. Results of this study emphasize the need for more robust integration of skin-speci c information guided by expert dermatologist opinion in publicly available patient information materials online.
Background
Cutaneous graft-versus-host disease (cuGVHD) is a complication of allogeneic hematopoietic stem cell transplantation that presents with varying severity and can significantly affect one’s quality of life (QOL). No trials have yet tested nonpharmacologic interventions to improve the QOL of patients with cuGVHD. The primary objective of the Expressive Helping in Support Groups for Cutaneous GVHD (EXPRESS-C-GVHD) Trial is to evaluate the effect of a support group that employs expressive writing on cutaneous and systemic GVHD symptoms, general distress, and QOL immediately after the intervention. Secondary objectives include evaluating the impact of the intervention on QOL at 1 month post intervention, as well as willingness to participate, compliance, feasibility, and satisfaction.
Methods
The EXPRESS-C-GVHD Trial will include patients with chronic cuGVHD who are at least 18 years old and able to use a writing utensil, have access to Zoom, an online video conference platform, and attend all four live support group sessions. Subjects will be recruited from the Department of Dermatology, Northwestern University, Chicago, IL and will participate in a 4-week program via Zoom. Program activities will be 1 hour long and consist of 40 minutes of participant-led verbal reflection and discussion in a group setting in response to prompts, and 20 minutes of expressive writing. Participants will fill out a baseline willingness survey, follow-up surveys after every session, and post-intervention surveys at 2 weeks and 1 month after intervention.
Discussion
The EXPRESS-C-GVHD Trial is a pilot trial and will assess whether a Zoom-based expressive writing intervention within the framework of a support group is feasible and can improve QOL outcomes among individuals with cuGVHD.
Trial Registration
The trial is registered under number NCT05694832
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