Abstract
Introduction
Hidradenitis suppurativa (HS), an inflammatory skin disorder characterized by painful nodules and abscesses, has varying prevalence among different races/ethnicities. This study explored the social drivers of health, burden, and impact of HS among different racial and ethnic groups.
Methods
An online, cross-sectional survey was conducted among adult patients with HS (September 2023–December 2023) in the USA. Patients were recruited through HS Connect (patient advocacy group) and AmeriSpeak (US national sample panel). Descriptive data were collected using patient-reported outcome measures and de novo questions about patients’ disease knowledge and perception, healthcare access and utilization, impact on quality of life (QoL), and social impact. All analyses were descriptive and stratified by racial/ethnic groups.
Results
The study included 583 patients (mean age, 34.8 years; 95.5% female) representing a range of racial backgrounds: Black or African American (n = 273; 46.8%), white (n = 236; 40.5%), Two or More Races (n = 47; 8.1%), American Indian or Alaska Native (n = 18; 3.1%), Asian (n = 7; 1.2%), and Native Hawaiian and Other Pacific Islander (n = 2; 0.3%). Ethnic representation also varied (Hispanic/Latino = n = 76; 13.0%).
Patients of all races and ethnicities reported considerable QoL impact (Dermatology Life Quality Index, EQ-5D-5L), with results for smaller subgroups (n < 10) included for descriptive completeness only and not intended for comparison with other groups. During flaring, most patients used over-the-counter products/medications (54.2%) or nonmedical intervention/home remedy (56.9%) Up to 36.5% of patients reported challenges in procuring food, utilities, medicine/healthcare, phone, clothing, or childcare when needed in the past year. Among those who paid out-of-pocket for their HS treatment, 55.6% reported that it stopped them from visiting a healthcare provider for treatment.
Conclusion
The findings indicate a high burden and impact of HS across all races and ethnicities. Patients reported social drivers of health and challenges with healthcare utilization, indicating the need for integrating social workers and care management teams in dermatology practice, which could facilitate improved care of patients with HS.
Supplementary Information
The online version contains supplementary material available at 10.1007/s13555-026-01765-3.
Keywords: Hidradenitis suppurativa, Social impact, Healthcare, Race, Ethnicity
Plain Language Summary
Hidradenitis suppurativa is a painful skin condition that causes lumps and abscesses. It affects people of all races and ethnicities but is more common in Black or African American individuals. This study surveyed 583 adults in the USA to understand how hidradenitis suppurativa affects people from different racial and ethnic backgrounds. Our focus was on how the disease impacts their daily lives, their ability to access healthcare, how often they visit doctors, their quality of life, and their mental and emotional well-being. Most people said that hidradenitis suppurativa lowers their quality of life and makes daily activities harder. During flaring, many used home remedies instead of seeing a doctor. People suffering from hidradenitis suppurativa also reported trouble getting basic needs such as food, medicine, and transportation. These challenges occurred among patients from different racial and ethnic groups; results for very small subgroups (Asian, Native Hawaiian/Other Pacific Islander) are reported descriptively only and should not be interpreted as representative of these groups or compared with other groups. The research underscores the importance of improving awareness and tailoring care for people with hidradenitis suppurativa, particularly those facing barriers to healthcare.
Supplementary Information
The online version contains supplementary material available at 10.1007/s13555-026-01765-3.
Key Summary Points
| Why carry out this study? |
| The study was conducted to better understand social drivers of health, disease burden, and the effects of hidradenitis suppurativa (HS) in patients from diverse racial and ethnic groups. |
| By examining these factors, the research aimed to address gaps in knowledge about disparities in HS care and outcomes, especially in populations disproportionately affected by the condition. |
| What did the study ask? |
| How does HS influence burden, healthcare access, and social outcomes among patients of diverse racial and ethnic groups in the USA? |
| What were the study outcomes/conclusions? |
| HS has a high burden across all groups, with major impacts on quality of life and healthcare access. Financial and social barriers hinder treatment. |
| What has been learned from the study? |
| Many patients rely on nonmedical remedies for the treatment of HS flares. |
| Awareness of the social drivers of health among patients with HS can lead to improved healthcare interactions and patient outcomes by helping providers identify barriers to care, tailor treatment plans to individual needs, and address challenges such as financial constraints, access to transportation, and availability of medicines. |
Introduction
Hidradenitis suppurativa (HS), also known as acne inversa, is a chronic, debilitating, inflammatory skin disorder that usually presents after puberty [1]. HS is characterized by painful, deep-seated nodules, abscesses, fistulae, and draining tunnels, most commonly affecting intertriginous areas such as the axillae, groin, gluteal region, and inframammary folds [1]. HS significantly impairs quality of life (QoL), affecting physical, social, and psychological well-being, with patients often experiencing stigma, embarrassment, self-consciousness, unemployment, and relationship issues [2–4]. A retrospective study of over 48 million individuals in the USA identified a 0.1% prevalence of HS, with Black and/or African American individuals experiencing a threefold higher prevalence compared with white individuals (296 per 100,000 versus 95 per 100,000; p < 0.001) [5].
Management of HS is multimodal and varies by disease severity, encompassing a combination of lifestyle modifications, systemic antibiotics, topical agents, biologics, anti-inflammatory agents, laser therapy, phototherapy, and surgical interventions. These treatments can impose a substantial financial burden on patients and payors [6–11].
Recent studies have highlighted the importance of social drivers of health in disease heterogeneity among different races and ethnic groups. In this study, we use the term social drivers of health to describe patient-level social needs and barriers (e.g., access to food, transportation, utilities, and healthcare) reported directly by participants. This term is preferred over social determinants of health, which, while widely used, has faced criticism for implying a passive, fixed relationship between social conditions and health outcomes that may undermine patient and community agency [12, 13]. Social drivers of health reflect a more actionable framing, distinguishing individual-level social needs from the broader structural and systemic factors that influence health at the population level [12, 13]. Higher rates of healthcare utilization, elevated disease burden, lower quality of life (QoL), prolonged diagnostic delays, and more significant barriers to healthcare access have been documented among Hispanic and Black participants relative to white participants [14–17]. However, race- and ethnicity-based evaluation to understand these disparities in HS is sparse [18–20].
Here, we sought to better characterize the overall burden of HS among patients from diverse racial and ethnic groups in the USA from the patient perspective, focusing on disease impact, healthcare access and utilization, QoL, and psychosocial outcomes.
Methods
Study Design and Population
This cross-sectional, non-interventional, anonymous, web-based survey was conducted among US participants with HS from 13 September 2023 to 22 December 2023. Patients were recruited through HS Connect (patient advocacy group) and the AmeriSpeak panel, a national probability sample frame with 97% coverage of the US population. Eligible patients were ≥ 18 years of age (≥ 19 years for Alabama and Nebraska residents, and ≥ 21 years for Mississippi and Puerto Rico residents); able to speak, read, and write US English or US Spanish; able to use a computer or smartphone with access to the internet; living in the USA; willing to provide informed consent to participate in the study; and had a self-reported diagnosis of HS from a medical professional.
Patients were excluded if they had a current or past diagnosis of lupus erythematosus, skin cancer, or if they self-reported three or more of the following conditions: atopic dermatitis, psoriasis, hidradenitis suppurativa, or alopecia areata. This was primarily due to the potential for these diagnoses to impact the patient-reported outcome measures selected for assessing HS in patients’ health, disease burden, quality of life, and social impact.
Survey Content
A comprehensive survey was designed to capture a multifaceted view of participants’ health, disease burden, lifestyle, and social factors. The self-administered electronic survey, consisting of 80–110 items, included screening questions to determine eligibility, population descriptors (Fitzpatrick scale, [21] Monk Skin Tone scale, [22]) and patient-reported outcome (PRO) measures to assess patients’ health and disease burden (EQ-5D-5L [23], Dermatology Life Quality Index [DLQI] [24], and Patient Global Impression of Severity [25], Neuro-QOL Stigma Short Form, PROMIS—Managing Social Interactions Short Form, and the Protocol for Responding to and Assessing Patients’ Assets, Risks, and Experiences (PRAPARE) tool [26] to evaluate social impact. Supplementary Table 1 provides additional information regarding the de novo survey items (e.g., patients’ knowledge about their skin condition, treatment for their skin condition, healthcare access and utilization, condition-related work impairment, and internet access). This study also included six questions derived from the All of Us Research Program healthcare access and utilization survey, which were originally developed for the National Health Interview Survey program [27].
Data Analyses
Descriptive statistics were used to characterize the sample and patient responses to survey questions. The analyses were further stratified by racial and ethnic groups, including Black or African American, white, American Indian or Alaskan Native, Asian, Native Hawaiian and Other Pacific Islander, two or more races, and Hispanic or Latino or not Hispanic or Latino. The patients’ racial and ethnic identities were separately inquired. This study reported descriptive results only; results for smaller subgroups (Asian and Native Hawaiian or Other Pacific Islander patients) are included for descriptive completeness and should not be interpreted comparatively.
Continuous variables were presented as mean, median, standard deviation (SD), and interquartile range. For categorical variables, the frequency and percent distribution by response category were described. Analyses were conducted using SAS Software, Version 9.4. No data imputation was performed, and unanswered questions were coded as missing. All instruments were scored according to the developers’ guidelines, including those for handling missing data.
Data quality checks were used to identify and exclude “speedsters,” who complete surveys in less than one-third of the median time, and “straight-liners,” who consistently select the same response option. Participants were remunerated with US$100 for survey completion by their respective recruiters.
Ethical Approval
The study was approved by the Advarra institutional review board (Pro00070530), conducted in accordance with the ethical principles in the Declaration of Helsinki, and was consistent with Good Pharmacoepidemiology Practices, as well as applicable laws and regulations, as appropriate. Participants provided authorization for the use and disclosure of their personal health information, covering the collection and release of data regarding treatment and its outcomes for the entire period of the study. Confidentiality of participant information was maintained throughout the study. All recruitment procedures complied with current Health Insurance Portability and Accountability Act regulations.
Result
Demographics and Clinical Characteristics
Out of 1549 eligible patients who completed the survey, data from 1284 patients passed the quality check, while 265 were excluded due to data quality issues. Among eligible respondents, 583 had HS, with a mean age of 34.8 years, and 95.5% were identified as female. Patients were identified from multiple racial and ethnic groups: Overall, 236 (40.5%) patients identified as white, 273 (46.8%) as Black or African American, 18 (3.1%) as American Indian or Alaskan Native, 7 (1.2%) as Asian, 2 (0.3%) as Native Hawaiian or Other Pacific Islander, and 47 (8.1%) belonged to two or more than two races; 76 patients (13.0%) identified as Hispanic or Latino.
All results are descriptive; data for very small subgroups (Asian and Native Hawaiian or Other Pacific Islander) are reported for descriptive completeness only and are not intended for comparative interpretation.
The most commonly reported health conditions were anxiety (53.3%) and depression (42.0%), with varying proportions of patients from different racial and ethnic groups experiencing them; these proportions are descriptive. The proportion of patients with household income < US$20,000 was 23.4% among Black or African American, 15.2% among white, and 33.3% among American Indian or Alaskan Native (Table 1). Table 1 summarizes baseline demographics and clinical characteristics by racial and ethnic groups. In the month before survey completion, 49.1% of patients self-reported moderate HS severity, while 34.8% reported severe HS based on Patient Global Impression of Severity (PGI-S).
Table 1.
Patient demographics and clinical characteristics
| Characteristic | Overall (N = 583) | Race | Ethnicity | ||||||
|---|---|---|---|---|---|---|---|---|---|
| Black or African American (N = 273) | White (N = 236) | American Indian or Alaskan native (N = 18) | Asian (N = 7) | Native Hawaiian and Other Pacific Islander (N = 2) | Two or more races (N = 47) | Not Hispanic or Latino (N = 507) | Hispanic or Latino (N = 76) | ||
| Mean age, years (SD) | 34.8 (8.1) | 34.7 (8.2) | 34.8 (7.8) | 36.1 (8.3) | 34.4 (11.2) | 36.5 (0.7) | 34.1 (8.3) | 35.3 (8.2) | 31.3 (5.9) |
| Female (n [%]) | 557 (95.5%) | 260 (95.2%) | 227 (96.2%) | 18 (100.0%) | 7 (100.0%) | 2 (100.0%) | 43 (91.5%) | 485 (95.7%) | 72 (94.7%) |
| Male (n [%]) | 26 (4.5%) | 13 (4.8%) | 9 (3.8%) | 0 (0%) | 0 (0%) | 0 (0%) | 4 (8.5%) | 22 (4.3%) | 4 (5.3%) |
| Race (n [%]) | |||||||||
| American Indian/Alaskan Native | 18 (3.1%) | 0 (0%) | 0 (0%) | 18 (100.0%) | 0 (0%) | 0 (0%) | 0 (0%) | 12 (2.4%) | 6 (7.9%) |
| Asian | 7 (1.2%) | 0 (0%) | 0 (0%) | 0 (0%) | 7 (100.0%) | 0 (0%) | 0 (0%) | 7 (1.4%) | 0 (0%) |
| Black or African American | 273 (46.8%) | 273 (100.0%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) | 261 (51.5%) | 12 (15.8%) |
| Native Hawaiian or Other Pacific Islander | 2 (0.3%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) | 2 (100.0%) | 0 (0%) | 2 (0.4%) | 0 (0%) |
| White | 236 (40.5%) | 0 (0%) | 236 (100.0%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) | 195 (38.5%) | 41 (53.9%) |
| Two or more races | 47 (8.1%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) | 47 (100.0%) | 30 (5.9%) | 17 (22.4%) |
| Ethnicity (n [%]) | |||||||||
| Hispanic or Latino | 76 (13.0%) | 12 (4.4%) | 41 (17.4%) | 6 (33.3%) | 0 (0%) | 0 (0%) | 17 (36.2%) | 0 (0%) | 76 (100.0%) |
| Not Hispanic or Latino | 507 (87.0%) | 261 (95.6%) | 195 (82.6%) | 12 (66.7%) | 7 (100.0%) | 2 (100.0%) | 30 (63.8%) | 507 (100.0%) | 0 (0%) |
| Education (n (%))b | |||||||||
| Less than high school degree | 23 (3.9%) | 6 (2.2%) | 11 (4.7%) | 2 (11.1%) | 0 (0%) | 0 (0%) | 4 (8.5%) | 19 (3.7%) | 4 (5.3%) |
| High school diploma or GED | 210 (36.0%) | 96 (35.2%) | 89 (37.7%) | 10 (55.6%) | 0 (0%) | 0 (0%) | 15 (31.9%) | 183 (36.1%) | 27 (35.5%) |
| More than high school | 350 (60.0%) | 171 (62.6%) | 136 (57.6%) | 6 (33.3%) | 7 (100.0%) | 2 (100.0%) | 28 (59.6%) | 305 (60.2%) | 45 (59.2%) |
| Employment status (n (%))b | |||||||||
| Unemployed | 93 (16.0%) | 46 (16.8%) | 38 (16.1%) | 3 (16.7%) | 1 (14.3%) | 0 (0%) | 5 (10.6%) | 76 (15.0%) | 17 (22.4%) |
| Part-time or temporary work | 75 (12.9%) | 35 (12.8%) | 25 (10.6%) | 5 (27.8%) | 0 (0%) | 0 (0%) | 10 (21.3%) | 65 (12.8%) | 10 (13.2%) |
| Full-time work | 328 (56.3%) | 166 (60.8%) | 124 (52.5%) | 5 (27.8%) | 5 (71.4%) | 1 (50.0%) | 27 (57.4%) | 287 (56.6%) | 41 (53.9%) |
| Unemployed but not seeking work (e.g., student, retired, disabled, unpaid primary care giver) | 87 (14.9%) | 26 (9.5%) | 49 (20.8%) | 5 (27.8%) | 1 (14.3%) | 1 (50.0%) | 5 (10.6%) | 79 (15.6%) | 8 (10.5%) |
| Marital status (n (%)) | |||||||||
| Married | 184 (31.6%) | 66 (24.2%) | 97 (41.1%) | 7 (38.9%) | 3 (42.9%) | 0 (0%) | 11 (23.4%) | 159 (31.4%) | 25 (32.9%) |
| Widowed | 7 (1.2%) | 3 (1.1%) | 3 (1.3%) | 0 (0%) | 0 (0%) | 0 (0%) | 1 (2.1%) | 6 (1.2%) | 1 (1.3%) |
| Divorced | 51 (8.7%) | 18 (6.6%) | 26 (11.0%) | 3 (16.7%) | 0 (0%) | 0 (0%) | 4 (8.5%) | 41 (8.1%) | 10 (13.2%) |
| Separated | 17 (2.9%) | 10 (3.7%) | 4 (1.7%) | 0 (0%) | 0 (0%) | 0 (0%) | 3 (6.4%) | 14 (2.8%) | 3 (3.9%) |
| Single, never married | 324 (55.6%) | 176 (64.5%) | 106 (44.9%) | 8 (44.4%) | 4 (57.1%) | 2 (100.0%) | 28 (59.6%) | 287 (56.6%) | 37 (48.7%) |
| Health conditions (n (%))a | |||||||||
| Anxiety | 311 (53.3%) | 100 (36.6%) | 166 (70.3%) | 13 (72.2%) | 5 (71.4%) | 1 (50.0%) | 26 (55.3%) | 270 (53.3%) | 41 (53.9%) |
| Depression | 245 (42.0%) | 74 (27.1%) | 136 (57.6%) | 11 (61.1%) | 3 (42.9%) | 0 (0%) | 21 (44.7%) | 213 (42.0%) | 32 (42.1%) |
| HS severity in the last month? (n (%))b | |||||||||
| Mild | 94 (16.1%) | 42 (15.4%) | 36 (15.3%) | 4 (22.2%) | 1 (14.3%) | 1 (50.0%) | 10 (21.3%) | 78 (15.4%) | 16 (21.1%) |
| Moderate | 286 (49.1%) | 118 (43.2%) | 130 (55.1%) | 10 (55.6%) | 5 (71.4%) | 0 (0%) | 23 (48.9%) | 242 (47.7%) | 44 (57.9%) |
| Severe | 203 (34.8%) | 113 (41.4%) | 70 (29.7%) | 4 (22.2%) | 1 (14.3%) | 1 (50.0%) | 14 (29.8%) | 187 (36.9%) | 16 (21.1%) |
| Current medications for HS (n (%))a | |||||||||
| Prescription pills | 233 (40.0%) | 114 (41.8%) | 89 (37.7%) | 6 (33.3%) | 4 (57.1%) | 1 (50.0%) | 19 (40.4%) | 205 (40.4%) | 28 (36.8%) |
| Prescription injections | 118 (20.2%) | 60 (22.0%) | 46 (19.5%) | 1 (5.6%) | 2 (28.6%) | 0 (0%) | 9 (19.1%) | 107 (21.1%) | 11 (14.5%) |
| Prescription creams/lotions/washes | 281 (48.2%) | 126 (46.2%) | 109 (46.2%) | 11 (61.1%) | 4 (57.1%) | 2 (100.0%) | 29 (61.7%) | 243 (47.9%) | 38 (50.0%) |
| None of the above | 210 (36.0%) | 96 (35.2%) | 92 (39.0%) | 7 (38.9%) | 1 (14.3%) | 0 (0%) | 14 (29.8%) | 179 (35.3%) | 31 (40.8%) |
| Treatment satisfaction (n (%))c | |||||||||
| n = 373 | n = 177 | n = 144 | n = 11 | n = 6 | n = 2 | n = 33 | n = 328 | n = 45 | |
| Very satisfied | 22 (5.9%) | 18 (10.2%) | 3 (2.1%) | 0 (0%) | 0 (0%) | 0 (0%) | 1 (3.0%) | 19 (5.8%) | 3 (6.7%) |
| Satisfied | 137 (36.7%) | 60 (33.9%) | 56 (38.9%) | 1 (9.1%) | 3 (50.0%) | 1 (50.0%) | 16 (48.5%) | 118 (36.0%) | 19 (42.2%) |
| Dissatisfied | 164 (44.0%) | 78 (44.1%) | 66 (45.8%) | 8 (72.7%) | 3 (50.0%) | 1 (50.0%) | 8 (24.2%) | 146 (44.5%) | 18 (40.0%) |
| Very dissatisfied | 50 (13.4%) | 21 (11.9%) | 19 (13.2%) | 2 (18.2%) | 0 (0%) | 0 (0%) | 8 (24.2%) | 45 (13.7%) | 5 (11.1%) |
| Household income (n (%))d | |||||||||
| Less than US$20,000 | 121 (20.8%) | 64 (23.4%) | 36 (15.2%) | 6 (33.3%) | 0 (0%) | 1 (50.0%) | 14 (29.8%) | 106 (20.9%) | 15 (19.7) |
| US$20,000 to US$39,999 | 146 (25.0%) | 73 (26.7%) | 60 (25.4%) | 5 (27.8%) | 0 (0%) | 0 (0%) | 8 (17.0%) | 123 (24.3%) | 23 (30.3%) |
| US$40,000 to US$49,999 | 70 (12.0%) | 35 (12.8%) | 29 (12.3%) | 2 (11.1%) | 0 (0%) | 1 (50.0%) | 3 (6.4%) | 62 (12.2%) | 8 (10.5%) |
| US$50,000 to US$99,999 | 165 (28.3%) | 74 (27.1%) | 73 (30.9%) | 5 (27.8%) | 1 (14.3%) | 0 (0%) | 12 (25.5) | 144 (28.4%) | 21 (27.6%) |
| US$100,000 to US$149,999 | 63 (10.8%) | 22 (8.1%) | 27 (11.4%) | 0 (0%) | 5 (71.4%) | 0 (0%) | 9 (19.1%) | 56 (11.0%) | 7 (9.2%) |
| US$150,000 or more | 17 (2.9%) | 5 (1.8%) | 10 (4.2%) | 0 (0%) | 1 (14.3%) | 0 (0%) | 1 (2.1%) | 16 (3.2%) | 1 (1.3%) |
| Missing | 1 (0.2%) | 0 (0%) | 1 (0.4%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) | 1 (1.3%) |
| Skin color per Monk Skin Tone Scale, n (%) | |||||||||
| 1 (lightest) | 27 (4.6%) | 0 (0%) | 26 (11.0%) | 0 (0%) | 0 (0%) | 0 (0%) | 1 (2.1%) | 25 (4.9%) | 2 (2.6%) |
| 2 | 71 (12.2%) | 0 (0%) | 67 (28.4%) | 0 (0%) | 0 (0%) | 0 (0%) | 4 (8.5%) | 65 (12.8%) | 6 (7.9%) |
| 3 | 49 (8.4%) | 1 (0.4%) | 47 (19.9%) | 0 (0%) | 0 (0%) | 0 (0%) | 1 (2.1%) | 39 (7.7%) | 10 (13.2%) |
| 4 | 89 (15.3%) | 10 (3.7%) | 62 (26.3%) | 7 (38.9%) | 2 (28.6%) | 0 (0%) | 8 (17.0%) | 71 (14.0%) | 18 (23.7%) |
| 5 | 92 (15.8%) | 29 (10.6%) | 29 (12.3%) | 11 (61.1%) | 2 (28.6%) | 1 (50.0%) | 20 (42.6%) | 61 (12.0%) | 31 (40.8%) |
| 6 | 86 (14.8%) | 73 (26.7%) | 5 (2.1%) | 0 (0%) | 2 (28.6%) | 1 (50.0%) | 5 (10.6%) | 80 (15.8%) | 6 (7.9%) |
| 7 | 111 (19.0%) | 102 (37.4%) | 0 (0%) | 0 (0%) | 1 (14.3%) | 0 (0%) | 8 (17.0%) | 108 (21.3%) | 3 (3.9%) |
| 8 | 49 (8.4%) | 49 (17.9%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) | 49 (9.7%) | 0 (0%) |
| 9 | 9 (1.5%) | 9 (3.3%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) | 9 (1.8%) | 0 (0%) |
| 10 (darkest) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) |
| Skin color per Fitzpatrick Skin Scale, n (%) | |||||||||
| White | 170 (29.2%) | 0 (0%) | 162 (68.6%) | 1 (5.6%) | 0 (0%) | 0 (0%) | 7 (14.9%) | 158 (31.2%) | 12 (15.8%) |
| Beige | 114 (19.6%) | 16 (5.9%) | 65 (27.5%) | 13 (72.2%) | 3 (42.9%) | 0 (0%) | 17 (36.2%) | 74 (14.6%) | 40 (52.6%) |
| Brown | 200 (34.3%) | 161 (59.0%) | 9 (3.8%) | 4 (22.2%) | 4 (57.1%) | 2 (100.0%) | 20 (42.6%) | 176 (34.7%) | 24 (31.6%) |
| Dark brown | 82 (14.1%) | 79 (28.9%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) | 3 (6.4%) | 82 (16.2%) | 0 (0%) |
| Black | 17 (2.9%) | 17 (6.2%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) | 17 (3.4%) | 0 (0%) |
| Skin tone per Fitzpatrick Skin Scale, n (%) | |||||||||
| Light | 205 (35.2%) | 28 (10.3%) | 153 (64.8%) | 5 (27.8%) | 2 (28.6%) | 1 (50.0%) | 16 (34.0%) | 171 (33.7%) | 34 (44.7%) |
| Medium | 295 (50.6%) | 164 (60.1%) | 82 (34.7%) | 13 (72.2%) | 5 (71.4%) | 1 (50.0%) | 30 (63.8%) | 255 (50.3%) | 40 (52.6%) |
| Dark | 81 (13.9%) | 79 (28.9%) | 1 (0.4%) | 0 (0%) | 0 (0%) | 0 (0%) | 1 (2.1%) | 79 (15.6%) | 2 (2.6%) |
| Prefer not to answer | 2 (0.3%) | 2 (0.7%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) | 2 (0.4%) | 0 (0%) |
FPL Federal Poverty Level; GED General Educational Development; HS hidradenitis suppurativa; SD standard deviation
All results are descriptive; data for very small subgroups (Asian and Native Hawaiian or Other Pacific Islander) are reported for descriptive completeness only and are not intended for comparative interpretation
aResponses are not mutually exclusive
bPatient-reported disease severity
cQuestion was only applicable if the patient reported taking medications in response to the question “What medication are you currently taking for your hidradenitis suppurativa?”
dQuestion asked “During the past year, what was the total combined income for you and the rest of your household members?” Note: Household income range was collected in this survey; the upper bound was used to calculate %FPL based on the 2024 national poverty level
Severe HS was observed in 41.4% of Black or African American patients, 29.7% of white patients, and 22.2% of American Indian or Alaska Native patients. Among Asian (n = 7) and Native Hawaiian or Other Pacific Islander (n = 2) patients, severe HS was observed in 14.3% and 50.0%, respectively; these results are descriptive only and should not be compared with other groups.
Quality of Life
EQ-5D-5L
The mean (SD) EQ-5D-5L index score for all patients was 0.6 (0.3). Scores were generally consistent among patients from different racial and ethnic groups, with results for smaller subgroups presented descriptively for completeness. The overall mean (SD) EQ-5D-5L Health visual analog scale (VAS) score was 64.3 (19.0) and was similar among all subgroups (Supplementary Table 2). These are low scores on the EQ-5D-5L VAS scale (0–100), indicating a big impact of HS on patients, regardless of race and ethnicity. The EQ-5D-5L domain scores are summarized in Supplementary Table 3.
DLQI
The overall mean (SD) DLQI score was 19.3 (7.2), with most patients (86.3%; n = 503) reporting “very large” to “extremely large” effect on patients’ lives. Mean DLQI scores were generally consistent among patients from different racial and ethnic groups; results for smaller subgroups are included for descriptive completeness only (Supplementary Table 4). The proportion of patients who reported an “extremely large” effect on their lives was 57.1% (n = 4/7) among Asian patients, 53.1% (n = 145/273) among Black or African American patients, and 38.9% (n = 7/18) among American Indian or Alaska Native patients. All results are descriptive and not intended for group-to-group comparison. Descriptive statistics for individual DLQI questions are presented in Supplementary Table 4.
PRAPARE
The overall mean (SD) PRAPARE scores are shown in Fig. 1a. In the PRAPARE questionnaire, 17.7% of patients reported that lack of transportation prevented them from attending medical appointments. Additionally, 15.6% indicated that transportation issues affected their ability to attend meetings, work, or procure items necessary for daily living. A majority of patients (74.6%; n = 435/583) did not experience any transportation-related issues. A total of 16.1% (n = 38/236) white patients and 17.2% (47/273) Black or African American patients reported that lack of transportation prevented them from attending medical appointments. A similar observation was noted among 38.9% (n = 7/18) American Indian or Alaska Native patients and 27.6% (n = 21/76) Hispanic or Latino patients. All subgroup results are descriptive, with very small subgroups included for descriptive completeness only (Fig. 1b).
Fig. 1.
Patient-reported social drivers of health: data from the PRAPARE questionnaire by race and ethnicity. a Mean PRAPARE score. b Proportion of patients affected by lack of transportation. c Proportion of patients (household members) unable to access basic necessities when needed in the past year. PRAPARE Protocol for Responding to and Assessing Patients’ Assets, Risks, and Experiences; SD standard deviation. All results are descriptive; data for very small subgroups (Asian and Native Hawaiian or Other Pacific Islander) are reported for descriptive completeness only and are not intended for comparative interpretation. Total PRAPARE scores range from 0 to 22, with 0 indicating the participant reported no social drivers of health risks and 22 indicating the participant reported all measured risks. Higher mean PRAPARE scores indicate increased social drivers of health risks
As a part of the PRAPARE questionnaire, all patients (N = 583) were also asked if they or their household members were unable to access basic necessities when needed in the past year. Overall, about a third of patients reported being unable to procure food (33.1%) or medicine or healthcare (36.5%) when needed. In addition, some patients reported that they or their household members were unable to procure utilities (28.5%), phone (23.8%), clothing (30.7%), or childcare (17.8%) when it was really needed. Among subgroups, the proportion of patients who reported being unable to procure medicine or healthcare was 43.4% among Hispanic or Latino patients, 41.5% among white patients, 44.4% among American Indian or Alaska Native patients, and 33.3% among Black or African American patients. All results are descriptive, with small subgroups included for completeness only (Fig. 1c).
Patient Interactions with Providers
Questions around patient interactions with providers asked about how often patients were treated with respect by their doctors or healthcare providers. Overall, 40.0% of the patients reported “always,” 33.4% reported “most of the time,” 24.2% reported “some of the time,” and 2.1% reported “none of the time.” Variations among subgroups were noted in the proportions of patients who reported always being treated with respect; these results are descriptive, with very small subgroups included for completeness and not intended for comparison (Table 2).
Table 2.
Patient responses to questions on provider interactions
| Item | Overall (N = 583) | Race | Ethnicity | ||||||
|---|---|---|---|---|---|---|---|---|---|
| Black or African American (N = 273) | White (N = 236) | American Indian or Alaskan Native (N = 18) | Asian (N = 7) | Native Hawaiian and Other Pacific Islander (N = 2) | Two or more races (N = 47) | Not Hispanic nor Latino (N = 507) | Hispanic or Latino (N = 76) | ||
| How often are you treated with respect by your doctors or healthcare providers? (n (%)) | |||||||||
| Always | 233 (40.0%) | 134 (49.1%) | 73 (30.9%) | 3 (16.7%) | 2 (28.6%) | 0 (0%) | 21 (44.7%) | 208 (41.0%) | 25 (32.9%) |
| Most of the time | 195 (33.4%) | 81 (29.7%) | 94 (39.8%) | 5 (27.8%) | 4 (57.1%) | 1 (50.0%) | 10 (21.3%) | 165 (32.5%) | 30 (39.5%) |
| Some of the time | 141 (24.2%) | 52 (19.0%) | 62 (26.3%) | 10 (55.6%) | 1 (14.3%) | 1 (50.0%) | 15 (31.9%) | 122 (24.1%) | 19 (25.0%) |
| None of the time | 12 (2.1%) | 4 (1.5%) | 7 (3.0%) | 0 (0%) | 0 (0%) | 0 (0%) | 1 (2.1%) | 10 (2.0%) | 2 (2.6%) |
| Missing | 2 (0.3%) | 2 (0.7%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) | 2 (0.4%) | 0 (0%) |
| How often do your doctors or healthcare providers ask for your opinions or beliefs about your medical care or treatment? (n (%)) | |||||||||
| Always | 116 (19.9%) | 63 (23.1%) | 42 (17.8%) | 2 (11.1%) | 0 (0%) | 0 (0%) | 9 (19.1%) | 98 (19.3%) | 18 (23.7%) |
| Most of the time | 114 (19.6%) | 52 (19.0%) | 41 (17.4%) | 4 (22.2%) | 4 (57.1%) | 1 (50.0%) | 12 (25.5%) | 101 (19.9%) | 13 (17.1%) |
| Some of the time | 192 (32.9%) | 80 (29.3%) | 91 (38.6%) | 7 (38.9%) | 2 (28.6%) | 0 (0%) | 12 (25.5%) | 165 (32.5%) | 27 (35.5%) |
| None of the time | 157 (26.9%) | 74 (27.1%) | 62 (26.3%) | 5 (27.8%) | 1 (14.3%) | 1 (50.0%) | 14 (29.8%) | 139 (27.4%) | 18 (23.7%) |
| Missing | 4 (0.7%) | 4 (1.5%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) | 4 (0.8%) | 0 (0%) |
| How often do your doctors or healthcare providers tell or give you information about your health and healthcare that was easy to understand? (n (%)) | |||||||||
| Always | 129 (22.1%) | 73 (26.7%) | 47 (19.9%) | 2 (11.1%) | 1 (14.3%) | 0 (0%) | 6 (12.8%) | 118 (23.3%) | 11 (14.5%) |
| Most of the time | 213 (36.5%) | 89 (32.6%) | 93 (39.4%) | 5 (27.8%) | 4 (57.1%) | 1 (50.0%) | 21 (44.7%) | 178 (35.1%) | 35 (46.1%) |
| Some of the time | 187 (32.1%) | 84 (30.8%) | 75 (31.8%) | 10 (55.6%) | 2 (28.6%) | 0 (0%) | 16 (34.0%) | 161 (31.8%) | 26 (34.2%) |
| None of the time | 51 (8.7%) | 24 (8.8%) | 21 (8.9%) | 1 (5.6%) | 0 (0%) | 1 (50.0%) | 4 (8.5%) | 47 (9.3%) | 4 (5.3%) |
| Missing | 3 (0.5%) | 3 (1.1%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) | 3 (0.6%) | 0 (0%) |
| How important is it to you that your doctors or healthcare providers understand or are similar to you in any of these ways? (e.g., in race, religion, or native language) (n (%)) | |||||||||
| Very important | 269 (46.1%) | 162 (59.3%) | 72 (30.5%) | 5 (27.8%) | 4 (57.1%) | 0 (0%) | 26 (55.3%) | 235 (46.4%) | 34 (44.7%) |
| Somewhat important | 147 (25.2%) | 61 (22.3%) | 69 (29.2%) | 2 (11.1%) | 3 (42.9%) | 1 (50.0%) | 11 (23.4%) | 126 (24.9%) | 21 (27.6%) |
| Slightly important | 89 (15.3%) | 32 (11.7%) | 47 (19.9%) | 5 (27.8%) | 0 (0%) | 1 (50.0%) | 4 (8.5%) | 79 (15.6%) | 10 (13.2%) |
| Not important at all | 78 (13.4%) | 18 (6.6%) | 48 (20.3%) | 6 (33.3%) | 0 (0%) | 0 (0%) | 6 (12.8%) | 67 (13.2%) | 11 (14.5%) |
| Missing | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) |
| How often were you able to see doctors or healthcare providers who were similar to you in any of these ways? (n (%)) | |||||||||
| Always | 54 (9.3%) | 27 (9.9%) | 22 (9.3%) | 1 (5.6%) | 0 (0%) | 0 (0%) | 4 (8.5%) | 46 (9.1%) | 8 (10.5%) |
| Most of the time | 124 (21.3%) | 55 (20.1%) | 59 (25.0%) | 0 (0%) | 3 (42.9%) | 0 (0%) | 7 (14.9%) | 110 (21.7%) | 14 (18.4%) |
| Some of the time | 235 (40.3%) | 101 (37.0%) | 99 (41.9%) | 9 (50.0%) | 4 (57.1%) | 2 (100.0%) | 20 (42.6%) | 202 (39.8%) | 33 (43.4%) |
| None of the time | 170 (29.2%) | 90 (33.0%) | 56 (23.7%) | 8 (44.4%) | 0 (0%) | 0 (0%) | 16 (34.0%) | 149 (29.4%) | 21 (27.6%) |
| Missing | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) |
| How often have you either delayed or not gone to see doctors or healthcare providers because they were different from you in any of these ways? (n (%)) | |||||||||
| Always | 42 (7.2%) | 20 (7.3%) | 18 (7.6%) | 1 (5.6%) | 0 (0%) | 0 (0%) | 3 (6.4%) | 36 (7.1%) | 6 (7.9%) |
| Most of the time | 69 (11.8%) | 30 (11.0%) | 27 (11.4%) | 2 (11.1%) | 2 (28.6%) | 0 (0%) | 8 (17.0%) | 60 (11.8%) | 9 (11.8%) |
| Some of the time | 186 (31.9%) | 91 (33.3%) | 72 (30.5%) | 6 (33.3%) | 2 (28.6%) | 1 (50.0%) | 14 (29.8%) | 156 (30.8%) | 30 (39.5%) |
| None of the time | 285 (48.9%) | 131 (48.0%) | 119 (50.4%) | 9 (50.0%) | 3 (42.9%) | 1 (50.0%) | 22 (46.8%) | 254 (50.1%) | 31 (40.8%) |
| Missing | 1 (0.2%) | 1 (0.4%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) | 1 (0.2%) | 0 (0%) |
All results are descriptive; data for very small subgroups (Asian and Native Hawaiian or Other Pacific Islander) are reported for descriptive completeness only and are not intended for comparative interpretation
When asked how often doctors or healthcare providers asked patients for their opinions or beliefs about their medical care or treatment, the most common overall response was “some of the time” (32.9%), while 26.9% reported “none of the time.” The proportion of patients who reported “none of the time” was similar for all racial and ethnic groups. All results are descriptive and not intended for comparison (Table 2).
Overall, most patients reported that it was easy for them to understand healthcare information given by their healthcare provider either “always” or “most of the time” (58.6%), while almost a third (32.1%) reported that it was easy to understand only “some of the time.” This was similar among all racial and ethnic groups, with smaller subgroups included for descriptive completeness; all results are descriptive (Table 2).
A total of 59.3% Black or African American patients and 30.5% of white patients reported that it was “very important” to them that their doctors or healthcare providers understand or were similar to them (e.g., in race, religion, or language). No major differences were noted among the ethnic groups (Table 2). The patients were also asked how often they delayed or did not visit doctors or healthcare providers because they were different from them (e.g., in race, religion, or native language), to which 7.2% of patients overall reported “always” and 11.8% reported “most of the time.” However, almost half of the patients reported that this happened “none of the time” (48.9%), and 31.9% reported this only happened “some of the time.” Subgroup patterns are presented descriptively, with small subgroups included for completeness only (Table 2).
Clinical History, Support, and Healthcare Access
At the time of survey completion, participants (N = 583) most commonly sought support for managing their HS from dermatologists (50.1%; n = 292), online communities (46.8%; n = 273), online searches (37.9%; n = 221), primary care providers (30.7%; n = 179), and family members (25.0%; n = 146); responses were not mutually exclusive. Over half of the white patients (56.8%; n = 134) and Hispanic and Latino patients (57.9%; n = 44) reported using online communities for support. When the patients (N = 583) were asked about what influenced them to see a healthcare provider for their HS, 30.7% (n = 179) responded that it was family members, 18.5% (n = 108) said social media, and 16.8% (n = 98) said it was through previous experience or knowledge (Fig. 2a).
Fig. 2.
Healthcare utilization as reported by patients with hidradenitis suppurativa. a Sources where patients looked for support to manage hidradenitis suppurativa. b The top three most common types of healthcare provider or medical specialists patients primarily see for medications to treat hidradenitis suppurativa. c The top three most common steps patients take when having a flare-up of symptoms of hidradenitis suppurativa. HS hidradenitis suppurativa. Responses to flare-up symptoms are not mutually exclusive. All results are descriptive; data for very small subgroups (Asian and Native Hawaiian or Other Pacific Islander) are reported for descriptive completeness only and are not intended for comparative interpretation
When asked what type of healthcare provider they primarily see for medications to treat HS, dermatologists (47.9%; n = 279) and primary healthcare providers (internist or general practitioner; 26.9%; n = 157) were most common, while 19.7% (n = 115) did not see any healthcare practitioner for their condition. Similar responses were noted among races and ethnic groups, with results for smaller subgroups included for descriptive completeness only (Fig. 2b).
In the event of flare-ups of HS, 54.2% (n = 316) of patients overall used an over-the-counter product or medication, 56.9% (n = 332) used a nonmedical intervention or home remedy, and 43.7% (n = 255) used prescription medication they already had (responses were not mutually exclusive). Similar responses were noted among all races and ethnic groups, with very small subgroups included for descriptive completeness only (Fig. 2c).
Overall, the most common services for the treatment of HS that were partially paid for out-of-pocket in the past 6 months by patients (not mutually exclusive) were medications (36.7%; n = 214). Notably, 40.3% (n = 95) white, 33.7% (n = 92) Black or African American, 44.4% (n = 8) American Indian or Alaskan Native, and 42.9% (n = 3) Asian patients reported paying for medication partially out-of-pocket. Results for small subgroups are included for descriptive completeness only (Fig. 3a). Among patients who reported out-of-pocket costs for medical services (n = 322), 55.6% (n = 179) reported that it prevented them from scheduling or attending an appointment for their HS (Fig. 3b). Additionally, 87.7% (n = 511) of patients reported they did not receive financial assistance through a patient assistance program; the proportions were similar among racial and ethnic groups (Fig. 3c).
Fig. 3.
Social impacts in patients with hidradenitis suppurativa. a Responses to “In the past six months, which of the following healthcare services for treatment of your hidradenitis suppurativa did you need to pay for partially out-of-pocket?” b Proportion of patients who stopped making appointments for hidradenitis suppurativa due to out-of-pocket costs. c Proportion of patients who received financial assistance from patient assistance program. a Responses are not mutually exclusive. b Responses were only recorded from patients who paid out-of-pocket for the condition. All results are descriptive; data for very small subgroups (Asian and Native Hawaiian or Other Pacific Islander) are reported for descriptive completeness only and are not intended for comparative interpretation
Impact on Daily Life
When asked about how HS has affected patients’ career and work life, the most common responses (not mutually exclusive) were “the emotional impact from HS has affected my ability to work” (36.7%) followed by “the amount I work has not changed but I am more distracted at work” (27.8%), and “I am unable to take a certain type of job” (24.7%). Overall, 24.0% of patients reported that HS did not affect their career or work life. A total of 39.0% white and 33.7% Black or African American patients reported emotional impact of HS affected their ability to work. A total of 25.0% white and 22.0% Black or African American patients reported being unable to take up a certain type of job. Around 35.5% of Hispanic and Latino patients and 23.1% of not Hispanic or Latino patients reported being unable to take up a certain type of job. In addition, 13.0% of not Hispanic nor Latino patients and 6.6% of Hispanic or Latino patients were unable to hold a steady job. All subgroup results are descriptive and not intended for comparative interpretation (Table 3).
Table 3.
Impacts of HS on patients’ daily activities by race and ethnicity
| Item | Race | Ethnicity | |||||||
|---|---|---|---|---|---|---|---|---|---|
| Overall (N = 583) | Black or African American (N = 273) | White (N = 236) | American Indian or Alaskan Native (N = 18) | Asian (N = 7) | Native Hawaiian and Other Pacific Islander (N = 2) | Two or more races (N = 47) | Hispanic or Latino (N = 76) | Not Hispanic nor Latino (N = 507) | |
| Impact on career and work life (n (%))a | |||||||||
| HS has not affected the patient’s career or work life | 140 (24.0%) | 66 (24.2%) | 55 (23.3%) | 7 (38.9%) | 0 (0%) | 1 (50.0%) | 11 (23.4%) | 18 (23.7%) | 122 (24.1%) |
| Stopped working completely | 80 (13.7%) | 33 (12.1%) | 38 (16.1%) | 2 (11.1%) | 0 (0%) | 1 (50.0%) | 6 (12.8%) | 13 (17.1%) | 67 (13.2%) |
| Worked fewer hours than before HS diagnosis | 63 (10.8%) | 32 (11.7%) | 22 (9.3%) | 3 (16.7%) | 0 (0%) | 0 (0%) | 6 (12.8%) | 9 (11.8%) | 54 (10.7%) |
| The amount of work was unchanged but patient was more distracted at work | 162 (27.8%) | 74 (27.1%) | 70 (29.7%) | 2 (11.1%) | 5 (71.4%) | 0 (0%) | 11 (23.4%) | 22 (28.9%) | 140 (27.6%) |
| Took another job with less seniority or responsibility than the job before HS diagnosis | 49 (8.4%) | 26 (9.5%) | 15 (6.4%) | 2 (11.1%) | 0 (0%) | 0 (0%) | 6 (12.8%) | 6 (7.9%) | 43 (8.5%) |
| Do not earn as much money as I could if I did not have HS | 92 (15.8%) | 43 (15.8%) | 39 (16.5%) | 1 (5.6%) | 1 (14.3%) | 0 (0%) | 8 (17.0%) | 10 (13.2%) | 82 (16.2%) |
| Did not receive an expected promotion | 13 (2.2%) | 7 (2.6%) | 5 (2.1%) | 0 (0%) | 0 (0%) | 0 (0%) | 1 (2.1%) | 3 (3.9%) | 10 (2.0%) |
| Changed career expectations | 81 (13.9%) | 35 (12.8%) | 37 (15.7%) | 0 (0%) | 0 (0%) | 0 (0%) | 9 (19.1%) | 13 (17.1%) | 68 (13.4%) |
| Unable to take a certain type of job | 144 (24.7%) | 60 (22.0%) | 59 (25.0%) | 5 (27.8%) | 2 (28.6%) | 0 (0%) | 18 (38.3%) | 27 (35.5%) | 117 (23.1%) |
| Only open to remote/telecommuting jobs | 80 (13.7%) | 38 (13.9%) | 29 (12.3%) | 0 (0%) | 2 (28.6%) | 0 (0%) | 11 (23.4%) | 9 (11.8%) | 71 (14.0%) |
| Unable to hold a steady job | 71 (12.2%) | 27 (9.9%) | 36 (15.3%) | 2 (11.1%) | 0 (0%) | 1 (50.0%) | 5 (10.6%) | 5 (6.6%) | 66 (13.0%) |
| Emotional impact from HS has affected the ability to work | 214 (36.7%) | 92 (33.7%) | 92 (39.0%) | 7 (38.9%) | 1 (14.3%) | 1 (50.0%) | 21 (44.7%) | 27 (35.5%) | 187 (36.9%) |
| Missing | 1 (0.2%) | 0 (0%) | 0 (0%) | 1 (5.6%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) | 1 (0.2%) |
| Impact of HS on various aspects of patients’ life (n (%))b | |||||||||
| HS has not affected any educational activities, relationships, family plans, or leisure activities | 113 (19.4%) | 60 (22.0%) | 35 (14.8%) | 6 (33.3%) | 2 (28.6%) | 0 (0%) | 10 (21.3%) | 20 (26.3%) | 93 (18.3%) |
| Pursue higher education (including delay in education, changed area of study, and increased length of time to complete studies) | 115 (19.7%) | 58 (21.2%) | 44 (18.6%) | 2 (11.1%) | 0 (0%) | 1 (50.0%) | 10 (21.3%) | 18 (23.7%) | 97 (19.1%) |
| Do things that interest the patient (including personal hobbies, travel, join a special interest group, and be active in a religious organization) | 393 (67.4%) | 168 (61.5%) | 177 (75.0%) | 9 (50.0%) | 5 (71.4%) | 2 (100.0%) | 32 (68.1%) | 52 (68.4%) | 341 (67.3%) |
| Marry or become involved in a long-term relationship | 210 (36.0%) | 99 (36.3%) | 83 (35.2%) | 4 (22.2%) | 2 (28.6%) | 1 (50.0%) | 21 (44.7%) | 21 (27.6%) | 189 (37.3%) |
| Have children | 89 (15.3%) | 39 (14.3%) | 42 (17.8%) | 1 (5.6%) | 1 (14.3%) | 0 (0%) | 6 (12.8%) | 12 (15.8%) | 77 (15.2%) |
| Perform parenting duties | 179 (30.7%) | 78 (28.6%) | 77 (32.6%) | 6 (33.3%) | 1 (14.3%) | 1 (50.0%) | 16 (34.0%) | 20 (26.3%) | 159 (31.4%) |
| Missing | 2 (0.3%) | 1 (0.4%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) | 1 (2.1%) | 0 (0%) | 2 (0.4%) |
HS hidradenitis suppurativa
Note: Responses were not mutually exclusive
Note: All results are descriptive; data for very small subgroups (Asian and Native Hawaiian or Other Pacific Islander) are reported for descriptive completeness only and are not intended for comparative interpretation
aPlease select the statement(s) that best describe(s) how hidradenitis suppurativa has affected your career and work life. The indicated proportion of patients agreed with the statement
bPlease select if your hidradenitis suppurativa has affected any of the following areas of your life. The indicated proportion of patients agreed with the statement
Regarding the impacts of HS in other areas of life, nearly one-fifth of overall patients reported no impact on educational activities, relationships, family plans, or leisure activities (19.4%). The most frequently reported impacts included their inability to (not mutually exclusive): “Do things that interest you (inc. personal hobbies, travel, join a special interest group, be active in a religious organization, etc.)” (67.4%), “Marry or become involved in a long-term relationship” (36.0%), and “Performing parenting duties” (30.7%; Table 3). The proportion of patients who reported an impact on various activities varied among racial and ethnic groups; all results are descriptive and not intended for comparison (Table 3).
Discussion
This study of US participants with HS utilized a comprehensive survey-based analysis to understand the patient perspectives of HS disease burden, social and QoL impacts, and healthcare access and utilization in the overall population, and explored observed patterns among racial and ethnic groups descriptively.
A significant disease burden accompanied by comorbidities such as anxiety and depression has been commonly reported in patients with HS [28, 29]. Consistent with these reports, most (83.9%) patients in the current study reported moderate-to-severe HS accompanied by anxiety among more than half and depression among > 40% of patients. In the general US population, the prevalence of mental illness varies by race, ranging from 34.9% among multiracial individuals to 16.4% among Asian individuals [30]. These differences highlight the need to understand how race and ethnicity may influence the mental health impact of HS.
These findings highlight actionable steps for clinical practice. Clinicians should routinely screen patients with HS for anxiety and depression and consider integration of mental health support into care [31]. Awareness of social drivers such as medication access, financial barriers, and reliance on online resources may facilitate individualized treatment planning [32, 33]. Patient education, referral to clinical specialists, and consideration of social and health system barriers may help mitigate HS burden [8, 33, 34]. Providers should recognize the diverse needs of patients from different racial and ethnic backgrounds and tailor interventions accordingly [35, 36].
HS results in severe QoL impairment, which is often worse than other skin diseases [37, 38], in alignment with the findings of this study. In the current study, patients reported impaired QoL as assessed using PRO measures (EQ-5D-5L and DLQI), wherein patients reported substantial impacts of HS on their career and work life, education, activities of interest, relationships, and parenting. These findings are consistent with reports from patients with atopic dermatitis, indicating that the condition affects multiple areas of their lives. Specifically, many patients experienced notable pain, discomfort, and anxiety or depression, as reflected in the EQ-5D-5 l assessments. Furthermore, patients indicated suffering in terms of symptoms and emotional well-being related to work and education as measured by the DLQI [39, 40].
Patients also reported challenges with healthcare access and utilization. About a fifth of the patients reported not seeing a healthcare provider to treat their HS, while about half consulted a dermatologist for support in managing their HS. Furthermore, during a flare-up, most patients used a nonmedical intervention, home remedy, or an over-the-counter product/medication. A similar lack of consultation with healthcare providers/dermatologists has previously been reported among patients with HS, with multiple possible reasons including stigma among patients, barriers to healthcare access, out-of-pocket costs, and cultural beliefs associated with different races/ethnicities [29]. Another reason could be the increasing internet use as a source of knowledge and support for patients with HS. Notably, more than a third of patients used online communities and online searches as sources of support in this study. However, the inconsistent quality of online content and conflicting information could result in mistrust and limited engagement with dermatologists, compromising patient education and decision-making [41, 42].
This study also investigated the social drivers of health using the PRAPARE tool and other survey questions. More than a third of patients reported being unable to access medicines or any healthcare, food, and clothing when needed, which could increase the delays in treatment/diagnosis, morbidity, and mortality. Cost of care is an important parameter for healthcare access and can be in the form of time required to access care and financial burden [33]. Current findings reveal that patients most commonly had to pay partially out-of-pocket for medications and outpatient visits (with primary care provider/specialist doctor). Of these, more than half of the patients stopped making appointments with their healthcare providers for HS treatment due to out-of-pocket costs. Overall, only a small proportion of patients (< 15%) received financial assistance from a patient assistance program.
Previous reports have revealed disparities in disease burden and healthcare utilization among patients with HS from different races and ethnicities [36]. Similarly, the current study indicated severe HS were observed among 41.4% Black or African American, 29.7% white, 22.2% American Indian and Alaska Native, 14.3% Asian, 50.0% Native Hawaiian and Other Pacific Islander, and 36.9% not Hispanic nor Latino patients. Due to very small sample sizes, particularly for Asian (n = 7) and Native Hawaiian or Other Pacific Islander (n = 2) patients, these results are descriptive only and should not be compared across groups.
While prior studies have documented HS disease burden, this study provides detailed, patient-reported insights on disease severity, mental health, healthcare access, and social drivers among patients from various racial and ethnic backgrounds in the USA. Perspectives from underrepresented groups provides descriptive insights into real-world challenges, including variations in access to medicine or healthcare, lifestyle, and social factors highlighting the need for enhanced social awareness and community support.
The findings of this study highlight the barriers in care and social drivers of health among patients with HS underscoring the need for tailored treatment approaches and support strategies that address patients’ specific needs. The findings also underscore the need to incorporate social drivers of health in clinical decision-making. Clinicians should use these insights to proactively screen for anxiety and depression, assess access to medications and healthcare, provide patient education, and refer patients to social services when needed. Future research exploring real-world challenges and social drivers of health among different races and ethnicities is needed to optimize HS care.
Limitations
Several limitations should be considered when interpreting these findings. First, the cross-sectional design precludes causal inference. In addition, HS diagnosis and disease severity were self-reported and not confirmed by a medical provider owing to the survey’s anonymity, which may introduce misclassification bias. The study population was predominantly female (95.5%), which may limit generalizability to the broader population with patients with HS. Thus, the results should be interpreted primarily in the context of female patients with HS. Small sample sizes for certain racial groups (including Asian and Native Hawaiian or Other Pacific Islander) restrict meaningful comparisons across groups and are reported descriptively only. Analyses were descriptive in nature without inferential statistical testing; therefore, findings should be interpreted as exploratory. Generalizability may also be limited due to convenience sampling and online recruitment methods. Participants recruited through HS Connect likely represent a more engaged or digitally connected subset of patients, as only those who received and read one of the advertisements were informed of the study, which may introduce selection bias. Most males were Black or African American (n = 13/26) and not Hispanic or Latino (n = 22/26). Although sex at birth varied by racial and ethnic groups, these variables were not controlled for given the descriptive analytic approach. Future studies with larger, more diverse samples and clinically confirmed diagnoses should incorporate multivariable analyses to control for sex and other potential confounders.
Despite these limitations, the findings highlight persistent disparities in disease burden and social drivers of health among patients with HS and underscore the need for targeted, clinically actionable interventions, including mental health support, addressing social drivers, and tailored treatment strategies.
Conclusions
A high burden and QoL impact of HS were observed across all races/ethnicities included in this study. Social barriers and challenges in accessing healthcare were also noted, highlighting the need for advancing culturally responsive, patient-centered care for people living with HS. Improvements in health outcomes begin with accurate measurement and should include a holistic patient assessment.
Supplementary Information
Below is the link to the electronic supplementary material.
Acknowledgements
We thank the participants of the study.
Medical Writing/Editorial Assistance
The authors thank Payal Jha and Sonal Saxena of Eli Lilly Services India Private Limited, Bengaluru, India, for providing medical writing support. This support was funded by Eli Lilly.
Author Contributions
Raj Chovatiya, Dipak R Patel, Brindley Brooks, Candrice Heath, and Vivian Y Shi contributed to data interpretation. Elizabeth D. Bacci, Evangeline Pierce, Julia R. Correll, and Beth Mitchell contributed to the study conception. Tarannum Jaleel, Elizabeth D. Bacci, Evangeline Pierce, Melissa L. Constantine, Julia R. Correll, and Beth Mitchell contributed to the study design. Elizabeth D. Bacci, Melissa L. Constantine, and Julia R. Correll contributed to data collection. Data analysis was performed by Elizabeth D. Bacci, Evangeline Pierce, Melissa L. Constantine, and Julia R. Correll. All authors interpreted the data, critically revised the final draft for important intellectual content, and approved the final manuscript.
Funding
This study was sponsored by Eli Lilly and Company, Indianapolis, USA, and the sponsor also funded the journal’s Rapid Service fees.
Data Availability
All data supporting the findings of this study are included in this article and its supplementary information files.
Declarations
Conflict of interest
Tarannum Jaleel has received research grants from UCB, Skin of Color Society, Dermatology Foundation, Duke Strong Start Award, Duke Precisions Genomics Collaboratory Pilot Grant, NIH BIRCWH from NIAMS K12AR084231. She has also received speaker honorarium from PeerView, consulting fees from Novartis, Eli Lilly, and travel funds to attend meetings from Skin of Color Society, and IDEOM. She is also associated with the Skin of Color Society in a leadership or fiduciary role within other boards, societies, committees, or advocacy groups, whether compensated or not. Raj Chovatiya has received consulting fees from AbbVie, Acelyrin, Alumis, Amgen, AnaptysBio, Apogee Therapeutics, Arcutis Biotherapeutics Inc., Argenx, Astria Therapeutics Inc., Avalere Health, Beiersdorf, Boehringer Ingelheim, Bristol Myers Squibb, Cara Therapeutics, Castle Biosciences, Celldex CLn Skin Care, Dermavant, Eli Lilly and Company, EMD Serono, Formation Bio, Galderma, Genentech, GSK, Incyte, Johnson & Johnson, Kenvue, LEO Pharma, L’Oréal, Nektar Therapeutics, Novartis, Opsidio, Pfizer Inc., RAPT, Regeneron, Sanofi, Sitryx, Takeda, TRex Bio, UCB, and Zai Lab; Raj Cjovatiya is an Editorial Board member of Dermatology and Therapy and was not involved in the selection of peer reviewers for this manuscript or any subsequent editorial decisions. Elizabeth D. Bacci, Melissa L. Constantine, and Julia R. Correll are employees of Evidera. Evangeline Pierce, Beth Mitchell, and Dipak R. Patel are employees and stockholders of Eli Lilly and Company. Brindley Brooks declared no competing interests. Candrice Heath has received consulting fees from Proctor and Gamble, Johnson and Johnson, Tower28, L’Oreal, WebMD, Kenvue, Arcutis, Lilly, Apogee, Nutrafol, Dermavant, and Unilever. Her university has received research grant funds from Robert A. Winn Excellence in Clinical Trials Award and Skin of Color Society. The affiliation of Candrice Heath has changed since this research was conducted and the manuscript was submitted to the journal. The author’s current affiliation is the Department of Dermatology, Howard University College of Medicine, Washington, D.C., USA. Vivian Y Shi has received speaker honorarium from Novartis, Sanofi-Regeneron, AbbVie, consulting fees from Novartis, Eli Lilly, and consulting fees from AbbVie, Almirall, Alumis, Aristea Therapeutics, Dermavant, Boehringer-Ingelheim, Apogee, Eli Lilly, Galderma, Genentech, Incyte, LEO Pharma, Menlo Therapeutics, Novartis, Pfizer, Regeneron, Sanofi-Genzyme, UCB, and Ceraclere.
Ethical Approval
The study was approved by the Advarra institutional review board (Pro00070530), conducted in accordance with the ethical principles in the Declaration of Helsinki, and consistent with Good Pharmacoepidemiology Practices, as well as applicable laws and regulations, as appropriate. Participants provided authorization for the use and disclosure of their personal health information, including the collection and release of data on treatment and outcomes throughout the study period. Confidentiality of participant information was maintained throughout the study. All recruitment procedures complied with current Health Insurance Portability and Accountability Act regulations.
Footnotes
Melissa L. Constantine: Author affiliation has changed since the time this research was conducted. Assigned affiliation is the institution of employment at the time this research was conducted.
Publisher’s Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Data Availability Statement
All data supporting the findings of this study are included in this article and its supplementary information files.