Skin-Related Quality of Life During Autoimmune Bullous Disease Course.

Importance: Autoimmune bullous diseases (AIBDs) are chronic relapsing-remitting conditions with significant morbidity. Skin-related quality of life (SRQL) may vary by AIBD subtype and disease type. Disease severity and flare severity can be difficult to define; SRQL can offer a key insight. Objectives: To investigate the Skindex-16 score as an SRQL measure in AIBD subtypes during flare and nonflare states and to evaluate Skindex-16 construct validity. Design, Setting, and Participants: This retrospective cross-sectional study was conducted from September 1, 2016, to February 1, 2020, among 192 patients at the University of Utah Health autoimmune dermatology clinic with pemphigoid, pemphigus, dermatitis herpetiformis, and linear immunoglobulin A disease. Patients had an encounter-associated diagnosis, Skindex-16 scores, and self-reported flare status. Statistical analysis was performed from March 2022 to June 2023. Exposure: Autoimmune bullous disease subtype and patient-reported flare status. Main Outcomes and Measures: Skindex-16 domain scores (emotions, symptoms, and functioning; range, 0-100, where 0 indicates no effect on SRQL and 100 maximum effect) and individual item scores were described by disease and flare status. Flare scores were expected to be higher by at least the standard error of measurement (SEm). Convergent validity was assessed using Spearman correlation among Skindex-16 scores, serologic titers, and other patient-reported outcome measures. Floor or ceiling domain scores (<20% of sample scoring either lowest or highest possible domain scores, respectively) were assessed for Skindex-16. Structural validity was assessed using confirmatory factor analysis (CFA). Results: The study included 192 patients with 212 visits (median age, 68 years [IQR, 58-76 years]; 123 of 212 women [58.0%]) with Skindex-16 scores (64 in flare state and 148 in nonflare state). Median Skindex-16 domain scores were higher for all disease categories among patients in the flare state compared with those in the nonflare state (pemphigoid [emotions: flare, 52.4 (IQR, 38.1-69.0); nonflare, 7 (IQR, 0-17); symptoms: flare, 37.5 (IQR, 29.2-58.0); nonflare, 13 (IQR, 0-25); functioning: flare, 26.7 (IQR, 10.0-56.7); nonflare, 0 (IQR, 0-3)]; pemphigus [emotions: flare, 54.8 (IQR, 31.0-81.0; nonflare, 0 (IQR, 0-19); symptoms: flare, 58.3 (IQR, 41.7-70.8); nonflare, 4 (IQR, 0-12.5); functioning: flare, 26.7 (IQR, 13.3-83.3); nonflare, 0 (IQR, 0-3.33)]; dermatitis herpetiformis [emotions: flare, 72.6 (IQR, 34.7-90.5); nonflare, 14.3 (IQR, 2.4-26.2); symptoms: flare, 69 (IQR, 31.3-85.4); nonflare, 12.5 (IQR, 0-29.2); functioning: flare, 38.3 (IQR, 5.0-63.2); nonflare, 0 (IQR, 0-13.3)]. This difference exceeded SEm cut points. Cronbach α was greater than 0.80 for all domains and AIBDs. Moderate or low correlations were seen with desmoglein 1 and bullous pemphigoid 180 titers. Moderate correlation existed between Skindex-16 and Patient-Reported Outcomes Measurement Information System Depression scores (emotions: ρ = 0.40; symptoms: ρ = 0.41; functioning: ρ = 0.48), and strong correlation existed between Skindex-16 and patient-reported disease severity (emotions: ρ = 0.71; symptoms: ρ = 0.73; functioning: ρ = 0.66). Floor domain scores greater than 20% were seen among patients in the nonflare state, but ceiling domain scores were rare (<10% for all domains); CFA model fit was poor. Conclusions and Relevance: In this cross-sectional study, SRQL was highly associated with flare of AIBDs. Skin-related quality of life was worse during periods without flare among patients with pemphigoid and dermatitis herpetiformis compared with pemphigus, highlighting residual SRQL morbidity. Skindex-16 showed good construct validity, but the poor CFA model fit needs further research. Clinical measurement of SRQL in AIBDs can add critical disease-severity information.

Methods Reporting Quality and its Association with Methods Section Length: A Cross-sectional Assessment of STROBE and CONSORT Reporting Adherence in Top-cited Dermatology Journals.

Background: Adequate methods reporting in observational and trial literature is critical to interpretation and implementation. Objective: Evaluate methodology reporting adherence in the dermatology literature and compare this to internal medicine (IM) literature. Methods: We performed a cross-sectional review of randomly-selected dermatology and IM manuscripts published between 2014-2018. Observational and trial articles were retrieved from PubMed. The primary outcome was percent adherence to STROBE or CONSORT methods-related checklist items (methods reporting score, MRS). Secondary outcomes included the relationship between methods section length (MSL) and MRS. We additionally compared these with IM literature. MRS and MSL were compared by overall article length, checklist type, field, journal, study topic, and funding source. Comparisons were assessed using univariable and multivariable linear regression. Results: We identified 389 articles (172 dermatology and 217 IM). Within dermatology, we identified 83 clinical trials and 89 observational studies. Mean MRS was 61.4 percent. A one word increase in MSL corresponded to a 0.02 percent increase MRS (ß=0.02, 95% CI 0.01-0.03). Mean MRS was 12.8 percent lower in the dermatology literature compared with IM (ß=-12.8%, -15.6-[-9.91]). Mean dermatology MSL was 345 words shorter (ß=-345, -413-[-277]). Studies from JAMA Dermatology, Journal of Investigative Dermatology, and British Journal of Dermatology, with government funding, and having supplemental methods had higher mean MRS's. Conclusion: Methods reporting quality was low in dermatology. A weak relationship between MRS and MSL was observed. These data support enhancing researcher emphasis on methods reporting, editorial staff, and peer reviewers that more strictly enforce checklist reporting.

Atopic Dermatitis: A Qualitative Study on the Burdens of Living with Itchiness.

Objective: We sought to understand the consequences itchiness has on daily life that may not be immediately obvious in clinical assessments for patients with atopic dermatitis (AD). Methods: Focus groups and interviews involving 21 patients with AD and 12 family members examined aspects of the effects of itchiness on health-related quality of life (HRQL). Investigators conducted a thematic analysis where two researchers independently coded the narratives and arrived at a consensus on major themes. Results: Five themes emerged from our discussions. 1) Miserable experience: Itchiness was difficult to control and cease. 2) Physical damage: Damage to skin and hair occurred from scratching to alleviate the itchiness. 3) Effects on daily activities: Itchiness could affect everything participants did, including how they dressed, used make-up, and slept. 4) Effects on social activities and relationships: The discomfort and embarrassment from scratching in public and others' reactions hindered participants' social lives. 5) Emotional consequences: Various emotional responses to itchiness were reported, including embarrassment, depression, and irritation. Limitations: Though qualitative research provides a level of detail not often found in quantitative analyses, this study design is limited by small sample size and generalizability. Conclusion: Understanding these challenges can help clinicians open deeper conversations with their patients to learn more about what patients need from their dermatologic care. While itchiness from AD is well-known, this study shows that its effects on HRQL are not minimal and that patients may need further care for the consequences of this symptom.

Exploring the knowledge, attitude, and practices of over-the-counter medical sellers in Ghana.

Background: Rural areas in sub-Saharan Africa face a high prevalence and morbidity of skin disease while also lacking access to dermatologists. In Ghana, where approximately 25 licensed dermatologists are available for 25 million people, community pharmacies, called over-the-counter medical sellers (OTCMS), were established to respond to accessibility inequities, albeit without equitable training. Objective: Our study evaluates the dermatologic knowledge, attitudes, and practices (KAP) of OTCMS in Ghana's Ashanti Region. Methods: To assess dermatologic KAP, we created a standardized questionnaire and recorded 13 interviews with OTCMS in seven communities. Interviews were completed with help from Ghanaian translators and transcripts were transcribed verbatim, then analyzed qualitatively to determine common themes for analysis. Results: This analysis identified six major themes: i) prescriber qualifications; ii) diagnostics; iii) therapeutics; iv) economics; v) health systems integration; vi) care-seeking behavior. Analysis of these themes outlined many cultural roles and challenges of OTCMS, including serving as the primary contact for dermatologic conditions in rural communities. While possibly necessary due to the lack of accessible dermatologists, this raises concerns for potential harm in diagnostic error and misuse of therapeutics due to the lack of formal dermatology training. Conclusion: In rural parts of Ghana, the KAP of OTCMS play a pivotal role in assessing and treating skin disease for those who might otherwise lack access to adequate dermatologic management. Furthermore, although our study identifies potential issues related to the roles played by OTCMS, it also suggests strategies to improve the dermatologic health of many Ghanaians by enhancing education and healthcare delivery in rural areas.

A survey of United States dermatologists' knowledge, attitudes, and practices with intramuscular triamcinolone.

Since the 1970s, intramuscular triamcinolone (IMT) has been available as an option for systemic corticosteroid use in dermatology. Although shown to be safe and effective in early studies, this method of systemic corticosteroid delivery fell out of favor in the 1980s in many United States residency programs. To identify factors associated with US dermatologists' preferences for and use of IMT we surveyed a random sample of US board-certified dermatologists to assess knowledge, attitudes, and practices regarding IMT in dermatologists' daily clinical practice. A total of 844 out of 2000 dermatologists completed the survey (42.2%). Only 55.0% reported feeling comfortable using IMT for steroid-responsive dermatoses, while 90.4% felt comfortable using oral corticosteroids for steroid-responsive dermatoses. Most participants (59.2%) did not prefer IMT over oral corticosteroids when both were indicated. One third (33.3%) of the participants reported that none of the faculty during their residency advocated using IMT. Receiving education on IMT indications (OR = 1.96 [95% CI: 1.46-2.63]) and encouragement to use IMT (OR = 4.29 [95% CI: 3.01-6.11]) during residency were positively associated with use of IMT at least once a month in current practice. Current knowledge, attitudes, and practices surrounding IMT vary amongst practicing dermatologists. Modifiable factors such as training could improve comfort with use of this short-term systemic steroid treatment modality.

Patient-Reported Outcome Measures and Their Clinical Applications in Dermatology.

With more disease- and symptom-specific measures available and research pointing to increased usefulness, patient-reported outcome measures (PROMs) can be routinely used in clinical care. PROMs increase efficiency in healthcare, improve the clinician-patient relationship, and increase patient satisfaction with their care. PROMs can be administered before, during, and after clinic visits using paper-and-pencil, mobile phones, tablets, and computers. Herein, we combine available literature with expert views to discuss overcoming barriers and helping dermatologists incorporate PROMs into routine patient-centered care. We believe dermatology patients will benefit from broader PROM implementation and routine clinical use. However, a few major barriers exist: (1) cost to implement the technology, (2) selecting the right PROMs for each disease, and (3) helping both patients and clinicians understand how PROMs add to and complement their current clinical experience. We provide recommendations to assist dermatologists when considering whether to implement PROMs in their practices.

Quality of Life Among Family of Patients with Atopic Dermatitis and Psoriasis.

BACKGROUND: Chronic inflammatory skin diseases like atopic dermatitis (AD) and psoriasis can severely impact patients' quality of life (QOL). However, the effect of these diseases can diminish the QOL of patients' family members as well. The objective of this study was to understand the impact on QOL for family members of patients diagnosed with AD or psoriasis. METHODS: We conducted focus groups and interviews with 23 individuals; 12 had a family member with AD, and 11 had a family member with psoriasis. After investigators independently coded the transcripts, thematic analysis was conducted. RESULTS: Three major themes emerged: (1) lifestyle consequences-many daily activities for family members, including but not limited to leisure activities, sleep, and cleaning, were affected by AD or psoriasis; (2) emotional consequences-family members felt frustrated, worried, or embarrassed, among other concerns, because of their loved ones' AD or psoriasis; (3) relationships-relationships between family members and their loved ones with AD or psoriasis could become strained, and though family members might try to be sympathetic, doing so could be difficult because of their lack of understanding of how these diseases feel and personally affect their loved ones. CONCLUSIONS: This study highlights the impacts of AD and psoriasis on the whole family. Clinicians should be mindful of the effects on QOL not only for patients but also for family members who live with and care about these patients. Especially when family members assist with treatments, it is important to understand family members' experiences when making treatment decisions.

A Single-Institution Cohort Study With Nevi of Special Site: Recurrence, Progression to Melanoma, and Patterns of Management.

ABSTRACT: Nevi of specialized sites (NOSS) occur on the scalp, ears, flexural, acral, and genital areas and display atypical clinical and histologic features. We assessed NOSS recurrence and progression to melanoma, management patterns, and associations between histologic features and treatment recommendations. We queried all histologic diagnoses of NOSS (n = 275) from 2012 to 2017 from a large U.S. academic medical center with reference dermatopathology laboratory and matched these to clinical records. A blinded panel of dermatopathologists re-evaluated lesions, catalogued histologic findings, and gave management recommendation. Associations with dermatopathologist decision and concordance between new and original recommendations were assessed. Of 117 cases with follow-up, 2 locally recurred (1.46%) and none eventuated in melanoma. Clinical features were not associated with original treatment recommendations. After histopathologic review, large melanocytes [odds ratio ratio (ORR) = 8.00, 95% CI, 1.35-47.4] and junctional mitotic figures (ORR = 65.0, 6.5-650) predicted excision recommendation. Likewise, accumulation of many (>9) high-risk features was associated with excision recommendation. Panel review changed treatment recommendation in 27% of cases. Fair concordance existed between original and panel recommendations (κ = 0.29, 0.15-0.44). The low rate of recurrence and lack of melanoma occurrence suggest that despite an atypical clinical and histopathologic appearance, these nevi have limited potential for malignant transformation. Histopathologic findings seem to be principal drivers behind the recommendation for excision in this analysis. Variability existed in treatment recommendations; the panel's consensus recommendation tended to downgrade treatment. This highlights the importance of further outcomes-based studies to identify true high-risk features and refine management guidelines.

Amelanotic Melanoma Treated as Fungal Infection for Years.

This study describes a case of amelanotic lentigo maligna melanoma in a 69-year-old female that had been growing for approximately 5 years. The asymptomatic lesion had been previously diagnosed and treated as a fungal skin infection, an inflammatory rash, and an actinic keratosis that did not respond to standard treatments. Biopsy revealed confluent and nested atypical melanocytes at the dermal-epidermal junction, consistent with melanoma in situ. Excisional biopsy revealed invasive lentigo maligna melanoma, Breslow depth 0.3 mm, with positive melanoma in situ at margins. She is now 3 years post-Mohs surgery without recurrence. When working up a patient with a hypopigmented or inflammatory lesion not responding to standard therapies, physicians should always consider biopsy to rule out unusual neoplastic etiologies, such as amelanotic melanomas.

Incorporating Patient-Reported Outcomes as a Vital Sign for Dermatologic Clinical Care and Clinical Investigations.

Patient-reported outcomes (PROs) provide quantitative assessments of patients' experiences with their skin diseases. PROs are usually much more comprehensive than what can be gleaned from a brief clinical history and more informative than what dermatologists can gather on clinical examination. Correlations between PROs and clinician assessments (e.g., investigator global assessment, PASI) are poor to moderate at best, and therefore data from each source are not redundant and can complement one another. PROs should serve as skin vital signs in dermatology. PROs can offer snapshots of the intensity of a symptom as well as the effects of symptoms, emotions, and functioning on a patient's skin-related QOL. Just as clinicians obtain a baseline blood pressure before starting antihypertensives, dermatology-specific PROs serve as a baseline from which clinicians can monitor (even remotely) for improvement or side effects with treatment and for flares. Both PROs and conventional vital signs are usually normal. It is when they are abnormal or different than expected that they become informative. We conclude by offering a roadmap for investigators to conduct the next steps in PRO research necessary to establish guidelines for transitioning PROs from clinical research and trials to routine clinical use.

Clinicians' perspectives on the integration of electronic patient-reported outcomes into dermatology clinics: a qualitative study.

BACKGROUND: Skin conditions can have profound negative symptomatic and psychological effects. Failure to address these effects can lead to poor treatment adherence and/or patient dissatisfaction. Despite patient-reported outcome (PRO) use being highly recommended, real-world adoption has been slow. OBJECTIVES: To assess clinicians' perceived facilitators and barriers to using PROs in daily practice. METHODS: We conducted in-person semi-structured interviews with 19 clinicians and thematic analysis of transcripts. RESULTS: Three main themes emerged: (1) clinicians' attitudes about the value of Skindex-16 in daily practice, (2) patient attitudes influencing clinicians' use of Skindex-16, and (3) clinicians' perceptions of their ability to use PROs successfully for clinical care. Clinicians recognized benefits to using Skindex-16, such as revealing patients' hidden concerns and highlighting discrepancies with the clinician's severity assessments. Conversely, clinicians also identified limitations, such as time constraints and lack of relevance for some skin conditions. Patient complaints about PRO relevance have influenced clinicians' use of Skindex-16 negatively. Finally, some clinicians recognized the need for more training in score interpretation and implementation strategies for optimal clinical flow. CONCLUSIONS: While most clinicians believed PROs like Skindex-16 can be useful for patient care, barriers need to be addressed to make PROs more practical for routine clinical care.

The Role of Pain in the Lives of Patients with Psoriasis: A Qualitative Study on an Inadequately Addressed Symptom.

Background: Patients with psoriasis commonly report experiencing severe sensory symptoms, and the burden of these symptoms can extend beyond unpleasant experiences to impair patients' health-related quality of life (HRQL). However, the symptom of pain and its consequences are still poorly understood in psoriasis patients. Objective: To understand the quality and intensity of pain associated with psoriasis as well as its interference with daily function in patients with psoriasis. Methods: Three focus groups and four interviews with psoriasis patients were conducted (n = 25). A trained facilitator used a semi-structured interview guide based on a literature review and a theory-driven approach. Two researchers independently coded the narratives and reached a consensus on the major themes using NVivo 12 software. Results: Our analysis produced five main themes regarding pain. (1) Perception of pain was illustrated through intense descriptors. (2) Patients identified pain triggers, including self-inflicted triggers. (3) Patients found coping strategies to deal with pain, including suppression of sensory experience. (4) Emotional suffering was linked primarily to the compulsion to continue scratching despite repeated efforts to stop and the failure of physicians to acknowledge the burden of the pain, which led to inadequate pain management. (5) Pain led to an overt impact on HRQL in these patients through interference with daily activity, intimate relationships, and sleep. Conclusions: Pain can be a significant hardship for patients with psoriasis. We encourage clinicians to inquire about pain separate from pruritus and to consider HRQL impacts of their patients' pain when determining treatments.

Why so Blue? (Or Should I Say Red?) Recognizing the Emotional Impact of Psoriasis on Patients and Family Members: A Qualitative Study.

Background: Psoriasis is a chronic skin condition with significant effects on quality of life, including impacts on emotional health. However, these experiences are not always addressed in clinic visits, despite their potential for significant effects on daily life. This study is part of a larger project on the effects of psoriasis on quality of life. The current information was analyzed separately because the amount of information on emotional impacts mentioned by participants was so significant that it warranted a separate analysis to thoroughly assess these experiences. Objective: To describe emotional consequences of psoriasis for patients and their family members. Methods: This project was conducted at an academic medical center in Utah. Experiences were discussed in interviews and focus groups with 25 patients and 11 family members. Thematic analysis was used to determine themes and subthemes. Results: This study sheds light on the damaging effects of psoriasis on emotional well-being, illustrating the challenges patients face from internal conflict, consequences for family members trying to cope with psoriasis in a loved one, and judgment from others who do not understand psoriasis and its challenges. Conclusion: Living with psoriasis leads to emotional consequences that may be left unaddressed in clinic visits, yet these experiences contribute significantly to quality of life. The stories told through this study can help clinicians understand how to identify and address emotional concerns to improve care for psoriasis patients and, as a result, improve quality of life for both patients and their families.