Content analysis and dermatologic gaps in online patient education materials for graft-versus-host disease

Graft-versus-host disease (GVHD) is a complex systemic disease which is associated with significant physical and psychological distress in patients. Given the complexity of this disorder and its multifactorial effects, it is important for patients to have access to education and learning about their disease. Patient education has been shown to reduce the uncertainty and stress that follows complex diseases such as GVHD. 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 cross-sectional 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. It was evident that there was inconsistent inclusion of cutaneous manifestations of acute and chronic GVHD and dermatologic management of GVHD. Results of this study emphasize the need for more robust integration of skin-specific information guided by expert dermatologist opinion in publicly available patient education materials online.


Introduction
Graft-versus-host disease (GVHD) is an immune systemmediated complication of allogeneic hematopoietic stem cell transplantation. Both acute and chronic GVHD most commonly present with cutaneous manifestations including skin hardening, rashes, and sclerosis [1]. GVHD management is multidisciplinary but cutaneous sequelae are most commonly managed by dermatology [2].
The disease course of GVHD adversely affects the quality of life of patients, with over one third of patients experiencing clinically significant anxiety or depression [3][4][5].
In medicine, patient education has been established as an important correlate of disease understanding and quality of life but no studies have evaluated the content or coverage of patient education in a systemic and complex disease like GVHD [6].

Methods
In this cross-sectional study, we utilized the Google Search engine with search terms "Graft-versus-host disease" on March 31, 2021 using a private incognito window and the top 100 non-sponsored web results were exported for review.
Web links were included if they were educational patient resources on GVHD. Web links were excluded if they were: 1. Peer-reviewed literature, 2. Clinical trial databases, 3. Education for physicians, 4. Inaccessible full-text, 5. News, or 6. Books. Authors independently screened all 100 links against inclusion and exclusion criteria and collected data.
Website content was analyzed for coverage of GVHD etiology, pathophysiology, symptoms, treatment, coverage of Acute GVHD, Chronic GVHD, cutaneous presentations, dermatologic management, and quality of life implications.

Results
52 of the top 100 search results were applicable for analysis. Of the 48 excluded results, 22 were peer reviewed, 6 were databases of clinical trials or genomes, 2 were pharmaceutical companies excluded under clinical trial databases, 3 were broken links or inaccessible, 4 were news articles, 5 were physician education links, 2 were books or book reviews, and 4 had insufficient text for assessment.
Only 3 (5.8%) results discussed psychosocial management of GVHD, and 23 (44.2%) and 15 (28.8%) results included a contact email and phone number, respectively. Physician-authored websites had a significantly higher proportion that included depression and anxiety as effects of GVHD (p < 0.05) than non-physician-authored websites. There were no significant differences in proportions of content metrics between university-hosted and non-universityhosted websites.

Conclusion
There exist several content gaps in online educational patient resources for GVHD. About half of web sources did not discuss specific cutaneous symptoms of either acute or chronic GVHD, which are the most common symptoms of GVHD. Almost no resources stated anxiety and depression as psychological effects of GVHD despite their prevalence in over 33% of patients. Further, less than 1 in 5 resources include Table 1 Content analysis of physician-authored and non-physician-authored links Of 52 assessed websites, 17 were physician-authored, and 35 were non-physician authored. These websites were assessed for content regarding a variety of parameters including information regarding GVHD etiology, risk factors, pathophysiology, acute versus chronic presentation, pharmacologic treatment options, diagnostics, cutaneous involvement of GVHD, as well as description of example cutaneous GVHD symptoms. Statistical analysis was performed using a paired t test. Significance was set at an alpha of p < 0.05 * Indicates statistical significance (p < 0.05)

Content analysis metric
Total number (%) Physician-authored website number (%) either dermatologists in discussion of GVHD management or psychosocial management of GVHD. Bolstering content and coverage of GVHD in patient educational resources especially as it relates to cutaneous manifestations can allow patients to seek timely care and better understand all facets of their diagnoses, both of which have implications for improved outcomes [6,7]. A limitation of this study is the evaluation of only online forms of patient education materials, as there are other sources of patient education initiated by physicians in conversation or at discharge, for example.