Beyond health-related quality of life: initial psychometric validation of a new scale for addressing the gap in assessing the full range of alopecia areata psychosocial burden.

BACKGROUND: Patients with alopecia areata (AA) report a broad range of psychosocial outcomes beyond those assessed in existing health-related quality of life measures. Yet, to date, no psychometrically validated scale based on patient-reported outcomes (PROs) appears to exist to comprehensively measure these AA-specific psychosocial outcomes. OBJECTIVES: The objective of this study was to develop such a scale, the Scale of Alopecia Areata Distress (SAAD), and to provide its initial validation evidence. METHODS: Using existing qualitative research on PROs for patients with AA, a pool of 144 items was generated and subsequently reviewed for relevance, redundancy, clarity and comprehensiveness by subject matter experts in AA psychosocial impacts and the research team. This review resulted in a reduced pool of 122 items, which was then administered to adult patients with AA residing in the USA. Exploratory Factor Analysis using Principal Axis Factoring extraction with oblique rotation identified the SAAD's underlying factor structure. To reduce the SAAD item length, additional item-reduction strategies were used. RESULTS: There were 392 participants who responded to the 122 items, each with four or fewer missing item responses. Three iterations of the data analysis plan resulted in a 41-item SAAD with seven underlying factors of psychosocial impact: Emotional and Cognitive Functioning, Romantic Relationships, Family Relationships, Primary Life Responsibilities, Non-Primary Life Responsibility Activities, Stigma, and Self-Perception Change. Each factor demonstrated acceptable to high levels of internal consistency reliability. CONCLUSIONS: Initial validation evidence of the SAAD-41 scale supports its potential as a comprehensive measure of AA-related psychosocial distress for US-based adults. Further scale validation is needed.

Psychosocial impact of pediatric alopecia areata: A survey study.

This study, which aimed to identify distress by sites of hair loss and psychosocial stressors for a pediatric alopecia areata population, enrolled 50 patients (32 females, 18 males, ages 7-17 years) from pediatric dermatology clinics, including a monthly hair disease clinic. Patients completed a 47-question survey. Scalp hair loss was rated as often or always bothersome in 34.7%; eyebrow loss in 24.3%; and eyelash loss in 21.6%, and 6 patients (12%) discontinued a social activity due to hair loss. Referral to behavioral/mental health specialists should be considered to improve psychosocial outcomes.

Assessment of Black Patients' Perception of Their Dermatology Care.

IMPORTANCE: The availability and quality of skin and hair care for black patients in the United States has been a subject of growing interest in dermatology. There is limited understanding of the perceptions of black patients about the care they receive from dermatologists and the factors affecting their care satisfaction. OBJECTIVE: To elucidate black patients' perceptions of their dermatology experience in and outside of a skin of color clinic (SOCC). DESIGN, SETTING, AND PARTICIPANTS: A cross-sectional study involving a survey and focus groups was conducted including adult black patients treated in an SOCC. Recruitment was conducted April through June 2015 through clinic-posted flyers. Participants engaged in 1 of 4 focus groups on July 14, 15, 29, or 30, 2015, and completed a survey. Data were analyzed March 2016 through June 2017. MAIN OUTCOMES AND MEASURES: Planned outcomes of the focus groups were black patients' inductively generated themes on their perspectives and experiences in dermatology clinics. Planned outcomes of the survey were patients' ratings of SOCC and non-SOCC dermatologists in terms of interaction style, cultural awareness, and treatment satisfaction. Importance of patient-dermatologist racial concordance was a planned outcome in both measures. Given lack of existing prior research, no specific hypotheses were generated. RESULTS: Of the 19 adult black patients who participated in the study, 18 (95%) were women, and the mean (SD) age was 50.0 (14.2) years. All patients reported positive experiences in the SOCC. Compared with non-SOCC dermatology treatment experiences, patients reported higher levels of overall satisfaction with SOCC dermatologists (t13 = 2.85; P = .01). Patients perceived that SOCC dermatologists were better trained to care for black patients (t13 = 4.42; P = .001); showed patients greater respect and dignity (t13 = 3.37; P = .005), as well as understanding (t13 = 2.56, P = .02); and were more trustworthy (t13 = 3.47; P = .004). The majority of the comments in the focus groups (n = 207) described 2 themes: dermatologists' interaction style (62/207; 30.0%) and knowledge about black skin and hair (42/207; 20.3%). Other themes were partnering with patients on outcomes (17/207; 8.2%), shared life experiences (14/207; 6.8%), and economic sensitivity (7/207; 3.4%). These themes accounted for a large part of the participants' discussion. Of all respondents, 71% (12/17) stated that they would prefer a black (or race concordant) dermatologist; this included 91% (10/11) of the race-concordant group and 33% (2/6) of the race-discordant group. CONCLUSIONS AND RELEVANCE: Participants reported that the SOCC dermatologists provided unique and uniformly beneficial care to black patients. Care satisfaction appeared most related to dermatologists' interpersonal style and specialized knowledge in care of black skin and hair. Findings suggest that black patients' dermatologic care satisfaction would increase if dermatologists underwent enhanced residency training in skin of color, cultural competency, cost-conscious care, and empathic communication skills, and if there were greater dermatology workforce diversity.