Patient Perspectives of Health System Barriers to Accessing Care for Hidradenitis Suppurativa

Abstract

ImportancePatient-perceived barriers to hidradenitis suppurativa (HS) care are poorly understood. Understanding health care barriers is a critical first step toward improving care for this population.ObjectiveTo characterize the health care experiences of people living with HS, including perceived barriers and facilitators to health care access, and to elucidate potential associations among these barriers and facilitators, health care access, and disease activity.Design, Setting, and ParticipantsIn this qualitative study, an inductive thematic analysis was conducted on 45 in-depth, 60- to 90-minute semistructured interviews of 45 people with HS from diverse sociodemographic backgrounds that took place between March and April 2020. Individuals were eligible if they could speak English, were 18 years or older, and were diagnosed with HS. A diagnosis of HS was confirmed through physician diagnosis or through self-reported, affirmative response to the validated screening question, “Do you experience boils in your armpits or groin that recur at least every six months?”Main Outcomes and MeasuresInterviews were audio recorded and transcribed verbatim. A modified grounded theory approach was used to develop the codebook, which investigators used for inductive thematic analysis.ResultsAmong the 45 participants included, the median (IQR) age was 37 (16) years, 33 (73%) were female, and 22 (49%) were White. There were 6 interrelated themes associated with participant-perceived barriers to accessing HS care: (1) bidirectional associations of disease activity and employment, (2) association of employment with health care coverage, (3) association of health care coverage with costs and perceived access to care, (4) association of costs with access to patient-centered care, (5) health care professional attitudes and knowledge influence patient-centered care and perceived access to care and disease activity, and (6) health system characteristics influence patient-centered care and associated costs, perceived access to care, and disease activity.Conclusions and RelevanceThis qualitative study highlights themes that generate a conceptual model for understanding barriers that may act synergistically to limit health care access and influence disease activity. The disease activity of HS may be reduced when cycle elements are optimized. This study also highlights areas for future investigations and potential systems-level changes to improve access to patient-centered HS care.

Access to dermatologic care and provider impact on hidradenitis suppurativa care: global survey insights

“…A qualitative study with individuals with HS found that they experienced emotional burden of perceived stigma and shame during health care interactions, a desire to be treated with respect, and a need for clear communication even if it meant health care providers acknowledged their knowledge gaps. 5 One explanation for our findings is that poor patient-physician rapport is exacerbated by HS-associated stigma and poor communication, which may result in patients perceiving that their provider was not knowledgeable about their condition.…”

“…Asian participants reported having a dermatologist as their primary HS provider (52.4%, n = 22/42) more frequently compared to other races. American Indian/Native participants more frequently reported having no HS provider (25.7%, n = 9/35) and less frequently reported dermatologist as their primary HS provider ( Interestingly, the median diagnostic delay was shorter for those without an HS provider compared with those with a dermatologist (median [interquartile range]; overall: 12 years [3][4][5][6][7][8][9][10][11][12][13][14][15]; no HS provider: 9 years [3-12.75]; dermatologist: 11.5 years [3][4][5][6][7][8][9][10][11][12][13][14][15]; nondermatologist HS provider: 13 years [3][4][5][6][7][8][9][10][11][12][13][14][15][16]).…”

“…4 Adalimumab, infliximab, etc. 5 Cyclosporine, apremilast, etc. DMARDs, disease-modifying antirheumatic drugs; HS, hidradenitis suppurativa; IV, intravenous.…”

“…Our study findings also provide novel information about sources of stigma that individuals with HS, particularly women with HS, encounter during medical appointments. Previous studies have focused on sources of internalized stigma in HS patients 5 , 10 , 11 ; however, there is limited data on the sources of stigma HS patients endure while trying to access care. Our study found that obesity and smoking were major sources of stigma among our cohort.…”

“…[1][2][3] HS patients experience a 7-to 10-year median diagnostic delay, a lack of uniformly effective treatments, and difficulty accessing dermatologic care. [4][5][6][7] Studies exploring the barriers to care that HS patients face are limited. The largest global HS survey study completed to date identified access to dermatology and treatment effectiveness as barriers to HS care 1 ; however, all study participants were already connected to dermatologic care and there was limited exploration into the causes and effects of barriers experienced.…”