Protocol for a feasibility trial (EXPRESS-C-GVHD) for an expressive helping intervention within a support group for cutaneous graft-versus-host-disease.

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 h long and consist of 40 min of participant-led verbal reflection and discussion in a group setting in response to prompts, and 20 min 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.

Skin cancer diagnosis over the lifetime in persons with different disabilities.

Persons with disabilities globally experience barriers to medical care, preventative screening, and experience disparate health outcomes compared to those without disabilities. The prevalence of skin cancer in persons with different disabilities is not known. The Behavioral Risk Factor Surveillance System (BRFSS) data from 2017 to 2021 was analyzed to study skin cancer across the lifetime in patients with disabilities related to hearing, vision, ambulation, cognition, independent living, and self-care. Of the 10% of BRFSS respondents with a history of skin cancer, the unadjusted prevalence in those with any disability (9.2%) was higher than those without (5.1%). Patients with hearing (adjusted odds ratio (aOR) 1.29, 95% CI 1.26-1.33) and cognitive disabilities (aOR 1.27, 95% CI 1.24-1.31) had higher odds of skin cancer than those with visual, ambulatory, selfcare, and independent living disabilities. Every disability subgroup had an elevated odds of skin cancer and this was maintained in age-stratified analysis. The elevated odds of a skin cancer diagnosis in Americans with different disabilities may be explained by differences in healthcare utilization but further research is needed to understand this association and propose proactive interventions.

Student-driven disability advocacy and education within the health professions: pilot survey results from a single-day virtual conference.

BACKGROUND: Health professional programs can promote equitable healthcare delivery but few programs include disability in these efforts. Limited opportunities exist for health professional students to engage with disability education within the classroom or beyond. The Disability Advocacy Coalition in Medicine (DAC Med) is a national interprofessional student-led organization which hosted a virtual conference for health professional students in October 2021. We describe the impact of this single-day virtual conference on learning and the current state of disability education across health professional programs. METHODS: This cross-sectional study utilized a 17-item post-conference survey. A 5-point Likert scale-based survey was distributed to conference registrants. Survey parameters included background in disability advocacy, curricular exposure to disability, and impact of the conference. RESULTS: Twenty-four conference attendees completed the survey. Participants were enrolled in audiology, genetic counseling, medical, medical scientist, nursing, prosthetics and orthotics, public health, and 'other' health programs. Most participants (58.3%) reported not having a strong background in disability advocacy before the conference, with 26.1% indicating they learned about ableism in their program's curriculum. Almost all students (91.6%) attended the conference to learn how to be a better advocate for patients and peers with disabilities, and 95.8% reported that the conference provided this knowledge. Eighty-eight percent of participants agreed that they acquired additional resources to better care for patients with disabilities. CONCLUSIONS: Few health professional students learn about disability in their curriculum. Single-day virtual, interactive conferences are effective in providing advocacy resources and empowering students to employ them.

Prevalence of self-skin exams and full body skin exams among patients with disabilities.

Full body skin exams and self-skin exams are screening methods associated with reduced skin cancer incidence due to earlier detection and treatment of lesions. We performed a retrospective analysis on skin cancer screening and risk factors from the Health Information National Trends Survey (HINTS). The study cohort comprised a weighted population of 478,008,736 respondents, of whom 26,727,370 were patients with disabilities. Respondents with disabilities reported a lower frequency of full body skin exams (OR 0.74; CI 95% 0.69-0.79; P < 0.001) and self-skin exams (OR 0.85; CI 95% 0.78-0.91; P < 0.001), compared to respondents without disabilities. Lower rates of self-guided and clinician-guided screening may adversely affect skin cancer-related morbidity and mortality in persons with disabilities. Future research is needed to identify barriers to self-skin exams and full body skin exams in this population.

Associations Between Shower and Moisturizing Practices with Atopic Dermatitis Severity: A Prospective Longitudinal Cohort Study.

Background: Evidence-based recommendations for optimal showering/bathing practices are lacking for atopic dermatitis (AD) patients. Objective: To determine longitudinal associations between showering/bathing practices and AD severity in AD patients. Methods: A prospective single-center dermatology practice-based study was performed. Shower/bath frequency and duration, and frequency of applying moisturizers after showering/bathing were evaluated. AD severity was assessed using objective component of Scoring Atopic Dermatitis (o-SCORAD), SCORAD-itch, Eczema Area and Severity Index (EASI), Patient-Oriented Eczema Measure (POEM), and Dermatology Life Quality Index (DLQI). Repeated-measures regression models examined associations of showering/bathing and moisturizing practices with change in AD severity measures over time. Results: Showering/bathing more than daily versus once daily was associated with higher SCORAD-itch, o-SCORAD, EASI, POEM, and DLQI scores; less than daily versus once daily showering/bathing was not associated with any outcomes. Consistent and even inconsistent application of moisturizer after showering/bathing was associated with lower o-SCORAD, EASI, and POEM scores. Showering/bathing duration was not associated with AD outcomes. Severe SCORAD-sleep, o-SCORAD, EASI, and POEM were associated with less adherence to all showering/bathing recommendations. Conclusion: Showering/bathing daily or less frequently and applying moisturizer postshower/bath were associated with lower AD severity; showering/bathing duration was not. Recommendations concerning shower durations may not be necessary when counseling AD patients.

Readability of Online Patient Education Materials for Graft-Versus-Host Disease.

Graft-versus-host disease (GVHD) is a complex systemic diagnosis which is associated with significant symptom distress in patients. Patient education has shown to mitigate uncertainty and distress, but to our knowledge, no studies have evaluated patient education materials on GVHD. We characterized the readability and understandability of patient education materials on GVHD available online. We conducted a Google search of the top 100 non-sponsored search results, selecting for full-text patient education that is not peer-reviewed or a news article. We evaluated the text of the eligible search results against the Flesch-Kincaid Reading Ease, Flesch Kincaid Grade Level, Gunning Fog, Automated Readability, Linsear Write Formula, Coleman-Liau Index, Smog Index, and Patient Education Materials Assessment Tool (PEMAT) for understandability. Among 52 included Web results, 17 (32.7%) were provider-authored and 15 (28.8%) were hosted on university Web sites. The total average scores on validated readability tools were Flesch-Kincaid Reading Ease (46.4), Flesch Kincaid Grade Level (11.6), Gunning Fog (13.6), Automated Readability (12.3), Linsear Write Formula (12.6), Coleman-Liau Index (12.3), Smog Index (10.0), and PEMAT Understandability (65.5). Provider-authored links scored poorer than non-provider-authored links on all metrics, with significant differences for the Gunning Fog index (p < 0.05). University-hosted links scored better than non-university-hosted links on all metrics. Evaluation of online patient education materials for GVHD demonstrates the need for more readable and understandable resources to mitigate the distress and uncertainty that patients may feel upon being diagnosed with GVHD.

Mental health burden of patients with activity-limiting skin conditions: a national analysis.

Cutaneous diseases are the fourth leading cause of nonfatal disease burden globally. In this study, we aimed to investigate the psychological symptom burden in patients with chronic activity-limiting cutaneous diseases. Our findings suggest that this patient population experience a wide range of interference with their daily lives and exhibit higher psychological burdens and lower quality of life. This study also identified that patients with activity-limiting skin conditions do not seem to seek more professional help or take more medications, which may suggest a potential gap in adequate mental health support and resources.

Characterization of online support group resources for patients with dermatologic conditions.

Dermatologic conditions can have significant quality of life effects on patients. The internet is a first-line accessible resource for patients to seek support and community in managing dermatologic diagnoses. The accessibility and content of online support resources for patients with dermatologic conditions is unclear so we sought to characterize these resources. We conducted online searches utilizing incognito Google, Yahoo, and Bing search engines and identified a total of 36 support group resources. 9 links were for single dermatology support groups and 27 links were for databases of support groups for different dermatologic conditions. We tallied number totals and percentages of online support resources and found wide variability of material in terms of the readability of the group websites, as well as content, medium, and hosts of the groups. Furthermore, we observed an imbalance in representation of resources for certain dermatologic conditions as opposed to others, further highlighting the strong need for the creation of easy-to-access support groups for patients across the spectrum of dermatological disease.

The epidemiology of skin cancer by UV index: cross-sectional analysis from the 2019 behavioral risk factor surveillance survey.

The extent to which the Ultraviolet (UV) index is associated with the prevalence of melanoma and keratinocyte cancer in the United States is not clear. We conducted a cross-sectional study using the Center for Disease Control and Prevention's (CDC) 2019 Behavioral Risk Factor Surveillance System (BRFSS) telephone interview survey to investigate the epidemiology of skin cancer in the US including age, household income, education, and marital and employment status. Of non-Hispanic white respondents, 9.6% (N = 29,925) reported a being told of a skin cancer diagnosis. The prevalence of skin cancer was significantly higher in high UV (> / = 8) states (11.8%, N = 36,575) than in medium UV (6-7) (9.0%, N = 27,812) and lower UV (< / = 5) (7.8%, N = 24,083) states (p < .0001). Respondents from a medium UV or high UV state had higher odds (1.21 [1.15-2.27], 1.55[1.47-1.63], respectively) of reporting a skin cancer diagnosis than those from a low UV state. The association of UV index with lifetime skin cancer prevalence reinforces the importance of educating patients on preventive practices such as avoidance of tanning beds and usage of UV protection with clothing and sunscreen.

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.

Adherence of dermatology home page websites to accessibility guidelines for persons with disabilities.

Patients with disabilities utilize accommodations or assistive technologies to access content from healthcare websites, but not all websites are built accessibly. We sought to evaluate the accessibility of dermatology home page websites from the 3 largest hospitals in each state of the United States (n = 150) using evaluation tools SortSite 6.42.924.0 and the Web Accessibility Evaluation Tool (WAVE). Of 150 hospitals evaluated, 128 (85%) were teaching hospitals and 48 (32%) were from the southern United States. The average numbers of contrast errors and all other errors detected by WAVE were 13.6 and 8.9, respectively. The mean number of Level A, AA and AAA issues detected per WCAG 2.1 guidelines were 5.7, 1.5, and 2.5, respectively. There were no significant differences in any accessibility metrics between teaching and non-teaching hospitals. Overall, dermatology home page websites have an average of 6 failures to meet the baseline A criteria of WCAG 2.1 and no websites were completely adherent to standards. The mean elements of contrast errors, other errors, alerts, and structural elements issues were all greater in the dermatology websites than in a federal public health website in a global analysis. Inaccessible dermatology websites present a significant barrier for patients to schedule and receive dermatologic care at hospitals nationally and may result in adverse outcomes for this underserved population. Dermatologic care teams and web developers must prioritize improving the accessibility of their websites to benefit all patients.

Prevalence, Predictors, and Longitudinal Course of Sexual Dysfunction in Adults With Atopic Dermatitis.

Background: Little is known about the burden of sexual dysfunction (SD) in atopic dermatitis (AD). Objective: The objective of this study is to determine the prevalence and associations of SD in adults with AD. Methods: A prospective dermatology practice-based study of adult patients (N = 677) with AD was performed. Sexual dysfunction in the past 7 days was assessed by patient report (4-point Likert scale). Atopic dermatitis severity was assessed using multiple validated clinician-reported and patient-reported outcomes. Results: At baseline, SD was reported by 19.35% of patients and was associated with being married (adjusted odds ratio [95% confidence interval], 2.252 [1.226-4.136]) and younger age (3.363 [1.768-6.397]) but not race or gender in models controlling for sociodemographics and AD severity. Adult-onset versus childhood-onset AD (2.781 [1.211-6.383]) was associated with significant SD. Sexual dysfunction and SD severity were associated with total and objective scoring AD, Eczema Area and Severity Index, body surface area, Investigator's Global Assessment, and their cross-product, Patient-Oriented Eczema Measure and Patient Global Assessment of AD. Atopic dermatitis lesions on the genitals (3.255 [1.405-7.541]), neck (2.244 [1.066-4.723]), and lower extremities (2.236 [1.265-3.951]) were particularly associated with SD. Conclusions: Sexual dysfunction is commonly reported by adults with AD and is associated with marriage, adult-onset AD, AD severity, and lesions on the genitals.

Dismantle Ableism, Accept Disability: Making the Case for Anti-Ableism in Medical Education.

There currently exists an exciting impetus for increased diversity among medical trainees and improved equity in medical care received by patients. Yet, inclusion of disability within these efforts is often forgotten, allowing the current cultural narrative of ableism to shape medical training. National structural challenges as early as medical school admissions and ableist barriers throughout the educational pipeline have yielded 1) a concerningly low prevalence of medical students and physicians in the US who identify as disabled and 2) propagation of systemic misunderstandings on disability in our healthcare system. This perspective addresses the need for a re-evaluation of diversity in medicine which includes ability status and a commitment to anti-ableism as a critical part of the conversation. We propose reforms and important considerations that could have meaningful implications necessary for improving the culture of disability inclusion in medical education.

Skin tone preferences and their influence on skin care behaviors.

Knowledge regarding skin tone preferences and their influence on skincare behaviors among people of color is limited. The objective of this study was to determine whether there is a difference between ideal and actual skin tone among people of color and whether this difference is associated with tanning and sunscreen use. This was a one-time, voluntary, anonymous, electronic survey designed in REDCap and delivered through ResearchMatch, a national electronic, recruitment tool. Eligible participants were at least 18 years old and self-identified as Black, Asian, Latinx, American Indian/Alaskan Native or Mixed Race. In total, 548 completed survey results were analyzed using SAS. Only the Latinx population was found to have a significant preference for tanner skin (p < 0.05). The Latinx population had significantly more subjects that participated in outdoor tanning than both the Black (p < 0.0001) and Asian population (p < 0.05). Latinx participants who indicated a preference for tanner skin were 2.8 times more likely to never use sunscreen than those without this preference (OR = 2.821, CI = 1.029-7.732, p < 0.05). Our findings have implications for how dermatologists screen, treat, and educate Latinx and skin of color populations.

Unpacking a Telemedical Takeover: Recommendations for Improving the Sustainability and Usage of Telemedicine Post-COVID-19.

Telemedicine technology and regulation have been steadily growing over the last 2 decades. Prior to the coronavirus disease-2019 (COVID-19) pandemic, the availability of telemedicine in health systems and coverage of telemedicine were variable. Sudden and improved access to telemedicine was propelled by the COVID-19 pandemic, during which governments, insurers, and health systems ramped up telemedical utilization with short-term exceptions and waivers. As in-person care opportunities open back up, the presence of telemedicine is not receding and thus its widespread adoption needs to be facilitated outside pandemic-specific conditions. Long-term funding for telemedicine acquisition, centralized electronic health records, extended waivers related to telemedicine coverage and use, a Medicaid expansion that involves parity in telemedicine and in-person care, a nationalized licensure system, and an assessment of what types of care settings can and cannot utilize telemedicine are necessary recommendations to improve the sustainability of telemedicine after the pandemic.

Atopic dermatitis is not associated with SARS-CoV-2 outcomes.

Atopic dermatitis is characterized by immune dysregulation, which may predispose toward worse COVID-19 outcomes. We conducted a retrospective cohort study to investigate the relationship of atopic dermatitis with COVID-19 symptom severity, hospitalization, length of hospital stay, requirement for oxygen therapy, long-term morbidity and mortality. Multivariable logistic regression models were constructed to examine the impact of atopic dermatitis (independent variable) on COVID-19 symptom severity, hospitalization, length of hospital stay, requirement for oxygen therapy, long-term morbidity and mortality (dependent variables). SARS-CoV-2 positive adult patients with diagnosed AD had similar odds of hospitalization (adjusted odds ratio [95% confidence interval]: 0.51 [0.20-1.35]), acute level of care at initial medical care (0.67 [0.35-1.30]), severe-critical SARS-CoV-2 (0.82 [0.29-2.30]), requirement of supplemental non-mechanical oxygen therapy (1.33 [0.50-3.58]), extended hospital stay (2.24 [0.36-13.85]), lingering COVID-19 symptoms (0.58 [0.06-5.31]) and COVID-19 death (0.002 [< 0.001- > 999]) compared to patients without AD. Our findings suggest AD is not an independent risk factor for COVID-19 severity or complications.