Healthcare Barriers and Hidradenitis Suppurativa: The Patient Experience

1. Patients with hidradenitis suppurativa (HS) experience compounding healthcare barriers related to disease activity, employment, healthcare coverage, costs, healthcare professionals’ attitudes, knowledge, perceived access to care, and health system characteristics.

2. Reducing barriers should be a focus of the healthcare system, with the goal of improving HS disease activity and outcomes.

Evidence Rating Level: 4 (Below Average)

Study Rundown: The decreased quality of life in patients with hidradenitis suppurativa (HS) is linked to delayed diagnoses (average: 7-10 years) and limited treatment options despite its debilitating pain and ability to progress to irreversible scarring. Previous studies investigated clinical care and research barriers for patients with HS. This qualitative cross-sectional study extended such work by identifying associations among various barriers and facilitators of healthcare access. Thematic analysis of semistructured, independent interviews with 45 patients with HS resulted in six main findings: (1) disease activity and employment influence one another, (2) employment influences healthcare coverage, (3) healthcare coverage and costs influence patient-perceived access to care, (4) costs influences access to patient-centred care, (5) attitudes of healthcare professionals and their knowledge influence patient-centred care, perceived access to care, and disease activity, and (6) health system characteristics influence patient-centred care, costs, perceived access to care, and disease activity. Strengths of this study included high interrater reliability and the inclusion of patient demographic data (i.e., age, gender, annual household income, race, and ethnicity). However, this study was limited to adult patients, where clinical data on disease severity was not collected. Furthermore, due to the high prevalence of comorbid diseases in HS patients, there may be existing associations not uncovered by this study approach. Overall, the results underscored how HS patient-centred care could be restricted by various compounding barriers and reducing such barriers may improve disease activity and outcomes.

Click to read the study in JAMA Dermatology

Relevant Reading: Identifying barriers to care and research in hidradenitis suppurativa: findings from a patient engagement event

In-Depth [cross-sectional]: This qualitative study was approved by institutional review boards at the University of California, San Francisco and Stanford University. Participants were recruited from institutional databases and HS online communities and were required to be 18 years or older, able to speak English, and have had a diagnosis of HS. HS diagnoses were operationalized as being confirmed by a physician or confirmation based on the interview question, “Do you experience boils in your armpits or groin that recur at least every six months?”. A thematic analysis was conducted from audio recorded, 60-90 minute, independent semistructured interviews with 45 patients (mean age, 37 years; 33 females [73%]). Race and ethnicity breakdown included 11 (24%), 5 (11%), 6 (13%), and 22 (49%) patients identifying as African American, Asian, Hispanic, and White, respectively. Most patients (13; 29%) had an annual household income between 50,000-74,000 USD. The interview questions consisted of 4 healthcare access themes: (1) facilitators and barriers, (2) economic factors, (3) healthcare professionals’ HS knowledge, and (4) support. The analysis consisted of three investigators who identified and exported core themes from 2566 excerpts to a codebook. The codebook was revised until interrater reliability was reached, defined as a pooled κ > 0.8. The results included six major associations: (1) bidirectional associations of disease activity and employment (e.g., missed work for appointments and flares), (2) association of employment with healthcare coverage (e.g., health insurance is tied to employment), (3) association of healthcare coverage with costs and perceived access to care (e.g., different insurance models influence perceived access to care), (4) association of costs with access to patient-centred care (e.g., time burden required to access care), (5) healthcare professional attitude and knowledge influence patient-centred care and perceived access to care and disease activity (e.g., nonverbal cues), and (6) health system characteristics influence patient-centred care and associated costs, perceived access to care, and disease activity (e.g., ability to choose from a variety of healthcare professionals).

Image: PD

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