Abstract
Hidradenitis suppurativa (HS) is an inflammatory skin disease associated with high morbidity and disability that has limited treatment options. People from racial and ethnic minority groups may experience greater disease severity and delay to diagnosis. This study assessed the impact of race/ethnicity on HS diagnosis and management in real‐world clinical settings. Data were derived from the Adelphi Real World Hidradenitis Suppurativa Disease Specific Programme, a survey of dermatologists and their consulting HS patients in five European countries and the USA in 2020/2021. Dermatologists returned demographic and clinical data, and treatment goals and satisfaction for their next five to seven consulting patients. Patients completed a questionnaire on disease history and diagnosis, disease burden, and treatment satisfaction. Groups were compared with bivariate tests. In total, 312 physicians returned data on 1787 patients; 57.6% were female and 77.7% White. People from racial and ethnic minority groups were younger than White patients (32.9 ± 11.6 vs. 34.9 ± 12.4, mean ± standard deviation) and reported symptoms at a younger age (23.3 ± 10.8 vs. 26.2 ± 11.1), but their time to first consultation was longer than for White patients (2.6 ± 5.7 vs. 1.2 ± 2.5 years). People from racial and ethnic minority groups took longer to receive a correct diagnosis following first consultation (2.7 ± 5.3 vs. 1.5 ± 4.1 years) and were more likely to be misdiagnosed with boils (73.5% vs. 40.4%). People from racial and ethnic minority groups had a greater disease awareness at diagnosis and reported wanting greater support. People from racial and ethnic minority groups reported a greater impact on life, more severe pain, and a greater level of activity impairment in the Work Productivity and Activity Impairment: General Health (27.0 ± 25.2 vs. 20.0 ± 20.6). All P values were ≤0.05. These data show evidence of delayed diagnosis and higher HS symptom burden amongst people from racial and ethnic minority groups, highlighting health disparities in HS.
Keywords: cross‐sectional study, delayed diagnosis, ethnicity, health equity, hidradenitis suppurativa
1. INTRODUCTION
Hidradenitis suppurativa (HS) is an inflammatory skin disease causing chronic or recurring inflamed lesions, scarring, and suppuration. 1 It is associated with a high morbidity burden and disability, as well as a significant unmet clinical and socioeconomic need. 2 , 3 , 4 Overall prevalence has been estimated at 0.3%–0.4% globally in recent meta‐analyses. 5 , 6 Treatments for HS are limited, and it has been previously noted that significant unmet clinical needs remain for the HS patient population. 7
There are few formalized diagnostic criteria for HS, and diagnosis is largely based on medical history and clinical presentation, making accurate diagnosis dependent on the ability of the treating physician to correctly recognize HS symptoms. 8 , 9 This frequently results in significant delays between onset of symptoms and receiving a correct diagnosis; an average delay of 7–10 years has been reported, 7 , 10 compared to an average of 1.6 years for psoriasis patients. 10
There is a range of known risk factors for HS, including smoking, 11 increasing body mass index (BMI), 12 and female sex. 13 People from racial and ethnic minority groups (PREG) have a higher prevalence of HS and greater disease morbidity; evidence suggests that in the USA, Black and Hispanic HS patients were more likely to have more severe disease 14 , 15 and Black patients were more likely to be hospitalized for their condition. 14 , 16 However, there is limited information on the diagnostic journey and disease experience of patients of different ethnicities, in particular outside of the USA.
Patient journey and diagnostic delay in HS have previously been largely studied from the physician's perspective and few studies have addressed the patient perspective on HS beyond the use of standardized patient‐reported outcome measures. Additionally, most studies have used small sample sizes in single countries and do not directly address the patient's reasons for seeking medical attention or their views on treatments. Furthermore, little is known about patients' experiences prior to being diagnosed and their reasons for seeking medical attention, factors that may be vital for improving diagnostic speed and accuracy. Therefore, this study aimed to use a large multinational dataset to characterize the HS journey from the patient perspective throughout their disease course, including HS diagnosis and treatment practices, and how this experience is influenced by factors including ethnicity.
2. METHODS
2.1. Data source
Data were derived from the Adelphi Real World Hidradenitis Suppurativa Disease Specific Programme (DSP)™, a cross‐sectional survey with retrospective data collection of physicians and their HS patients, conducted in Europe (France, Germany, Italy, Spain, the UK) and the USA between November 2020 and April 2021. The DSP methodology has been previously described, 17 , 18 validated, 19 and demonstrated to be representative and consistent over time. 20 General dermatologists managing two or more HS patients per month with active involvement in management and treatment decisions were included in the survey. Physicians were recruited by local fieldwork agencies. Physicians were compensated for participating in the DSP according to fair market rates consistent with the time involved.
Physicians were requested to complete questionnaires about their next five to seven eligible consecutively consulting patients, detailing demographic and clinical data including Hurley staging, as well as their reasoning for, and satisfaction with, treatment choices. To be included, patients had to be over the age of 10, have a physician‐confirmed diagnosis of HS, and not be involved in any clinical trials.
Patients were then subsequently invited to independently complete a voluntary questionnaire covering demographics, education status, their disease history prior to and since diagnosis, HS severity, disease trajectory and burden, as well as satisfaction with current treatment. No patient‐reported data were collected in the UK.
2.2. Patient‐reported outcome measures
2.2.1. Dermatology Life Quality Index
The Dermatology Life Quality Index (DLQI) is a dermatology‐specific quality of life questionnaire (not specific to HS) which covers six subdomains of wellbeing: symptoms and feelings, daily activities, leisure, work and school, personal relationships, and treatment. The 10 items are scored from 0 to 3 and summed to create an overall score indicating impairment of quality of life, ranging from 0 (no impact) to 30 (severe impact). 21
2.2.2. Hidradenitis Suppurativa Quality of Life Index
The Hidradenitis Suppurativa Quality Of Life index (HiSQOL) is a HS‐specific measure of quality of life, scored in symptoms, psychosocial, and activities‐adaptations domains, with scores ranging from 0 (no impact) to 68 (severe impact). 22
2.2.3. Work Productivity and Activity Impairment Questionnaire: General Health
Patients over the age of 18 reported on their daily productivity and activities through the Work Productivity and Activity Impairment Questionnaire: General Health (WPAI:GH). 23 The WPAI:GH measures patient's impairment over the last 7 days in four domains: absenteeism (work time missed), presenteeism (impairment at work/reduced on‐the‐job effectiveness), work productivity loss (overall work impairment), and activity impairment (regular activities other than work). Those in employment reported in all four domains, and all patients reported on the activity impairment domain. Scores range from 0 to 100 and are expressed as impairment percentages. Higher scores indicate greater impairment.
2.2.4. European Quality of Life Five Dimension
The European Quality of Life Five Dimension (EQ‐5D‐5L) descriptive health profile collects patient responses on mobility, self‐care, usual activities, pain/discomfort, and anxiety/depression. 24 This study uses the USA tariff. 25 The EQ‐5D‐5L is scored from 0 to 1 with higher scores indicating a better quality of life and negative values representing a health state worse than dead. The EQ‐5D‐5L Visual Analogue Scale ranges from 0 (worst imaginable health state) to 100 (best imaginable health state).
2.3. Statistics
Numeric values are reported as mean and standard deviation (SD) and were compared using t‐tests. Categorical variables are reported as absolute number (n) and proportion and were compared using Fisher's exact for binary categorical variables, Mann–Whitney U‐tests for ordered categorical variables, or chi‐squared tests for unordered categorical variables. Agreement between patients and physicians was quantified using Cohen's kappa (K). 26 For comparisons of ordinal variables, weighted kappa was used, with weights reflecting equal distances between levels. Kappa values ≤0 were taken as indicating no agreement, 0.0 < Κ ≤ 0.20 as none to slight, 0.2 < Κ ≤ 0.4 as fair, 0.4 < Κ ≤ 0.6 as moderate, 0.6 < Κ ≤ 0.8 as substantial, and 0.8 < Κ ≤ 1.0 as almost perfect agreement. 27 Where scales for physician‐ and patient‐reported variables differ, Spearman's rho was used to assess correlation. Missing data were not imputed, therefore the base of patients for analysis could vary from variable to variable and is reported separately for each analysis. All analyses were conducted using Stata 17.0 (StataCorp LP, College Station, TX, USA).
2.4. Ethics
The survey was performed in compliance with the European Pharmaceutical Market Research Association 28 and in full accordance with the US Health Insurance Portability and Accountability Act 1996. 29 The non‐interventional, observational nature of the data collection did not result in patients being placed at risk from the study. Patients provided informed consent to participate in the study, no personally identifiable information was collected, and all data collected from patients and physicians were anonymized by assigning each record a study number which could be used to pair records. Ethical approval was granted by the Western Copernicus Group Institutional Review Board (approval number AG8836).
3. RESULTS
3.1. Demographics
In total, 312 physicians returned data on 1787 patients (France, n = 244; Germany, n = 302; Italy, n = 80; Spain, n = 332; UK, n = 347; USA, n = 482). Patient demographic, clinical, and disease characteristics are presented in Table 1. In total, 77.7% of patients were White. Of the 399 PREG, 25.6% were African American, 24.1% were Hispanic/Latino, and 18.1% were Afro‐Caribbean. PREG were younger than White patients (32.9 ± 11.6 years compared to 34.9 ± 12.4 years, P = 0.004). Patient sex, BMI or education status had no significant differences. There was a significant difference in smoking status between PREG and White patients (P < 0.001); 28.6% of PREG compared to 36.8% White patients were current smokers. PREG were also less likely to be employed (57.7% compared to 69.1%, P < 0.001), but were more likely to be of high insurance status (46.2% compared to 29.1%, P < 0.001).
TABLE 1.
Physician‐reported patient demographics.
| Overall | PREG | White patients | p‐Value | |
|---|---|---|---|---|
| Patient number | 1787 | 399 | 1388 | |
| Age, years, mean ± SD | 34.4 ± 12.2 | 32.9 ± 11.6 | 34.9 ± 12.4 | 0.004 (TT) |
| Sex, female, n (%) | 1029 (57.6) | 226 (56.6) | 803 (57.9) | 0.688 (FE) |
| BMI, kg/m2, mean ± SD | 27.8 ± 5.3 | 28.2 ± 6.0 | 27.7 ± 5.1 | 0.104 (TT) |
| BMI groups a , n | 1787 | 399 | 1388 | |
| Underweight, n (%) | 17 (1.0) | 7 (1.8) | 10 (0.7) | 0.976 (MW) |
| Healthy weight, n (%) | 553 (31.0) | 121 (30.3) | 432 (31.1) | |
| Overweight, n (%) | 705 (39.5) | 154 (38.6) | 551 (39.7) | |
| Obese, n (%) | 512 (28.7) | 117 (29.3) | 395 (28.5) | |
| Smoking status, n | 1570 | 339 | 1231 | |
| Current smoker, n (%) | 550 (35.0) | 97 (28.6) | 453 (36.8) | <0.001 (CH) |
| Ex‐smoker, n (%) | 380 (24.2) | 64 (18.9) | 316 (26.7) | |
| Never smoked, n (%) | 640 (40.8) | 178 (52.5) | 462 (37.5) | |
| Education status b , n | 549 | 78 | 471 | |
| Low, n (%) | 113 (20.6) | 20 (25.6) | 93 (19.8) | 0.230 (FE) |
| High, n (%) | 436 (79.4) | 58 (74.4) | 378 (80.2) | |
| Employment status, n | 1659 | 371 | 1288 | |
| Employed, n (%) | 1104 (66.6) | 214 (57.7) | 890 (69.1) | <0.001 (CH) |
| Unemployed | 555 (33.5) | 157 (42.3) | 398 (30.9) | |
| Insurance status c | 1730 | 383 | 1347 | |
| Low, n (%) | 1161 (67.1) | 206 (53.8) | 955 (70.9) | <0.001 (FE) |
| High, n (%) | 569 (32.9) | 177 (46.2) | 392 (29.1) | |
| Ethnicity, n | 1787 | 399 | 1388 | |
| White, n (%) | 1388 (77.7) | 0 (0) | 1388 (100) | n/a |
| African American, n (%) | 102 (5.7) | 102 (25.6) | 0 (0) | |
| Hispanic/Latino, n (%) | 96 (5.4) | 96 (24.1) | 0 (0) | |
| Afro‐Caribbean, n (%) | 72 (4.0) | 72 (18.0) | 0 (0) | |
| Asian (Indian subcontinent), n (%) | 44 (2.5) | 44 (11.0) | 0 (0) | |
| Other d , n (%) | 85 (4.6) | 85 (21.3) | 0 (0) |
Abbreviations: BMI, body mass index; CH, chi‐squared test; FE, Fisher's exact test; MW, Mann–Whitney U‐test; PREG, people from racial and ethnic minority groups; SD, standard deviation; TT, t‐test.
Underweight defined as a BMI less than 18; healthy weight defined as a BMI greater than or equal to 18 and less than 25; overweight defined as a BMI greater than or equal to 25 and less than 30; obese defined as greater than or equal to 30.
High education status is defined as follows: France, 2 or more years of studies post baccalaureate; Germany, attended university; Italy, university degree or specialization post lauream; Spain, completed non‐mandatory secondary education or attended undergraduate or more; UK, higher education (non‐degree), university degree or postgraduate university degree; USA, college degree (2 year—associates), college degree (4 year—bachelor), graduate degree or higher or trade school/certificate program.
High insurance status is defined as follows: France, PUMa + CMU‐C, mutuelle or assurance privée; Germany, N/A; Italy, Servizio Sanitario Nazionale and assicurazione sanitaria private, assicurazione sanitaria privata; Spain, seguro médico privado, Sistema Nacional de Salud (SNS), y seguro médico privado: UK, private, insurance covered or self‐paid; USA, employer provided/sponsored insurance, partner/family member employer insurance, privately arranged insurance, health insurance exchange plan, Cobra, non‐medicare retired benefit.
Includes Middle Eastern (2.1% of total cohort), mixed race (1.1%), other Asian (0.7%), South‐East Asian (0.6%), native American (0.1%), and other (0.2%).
Bold values indicates significant P‐values <0.05.
3.2. Clinical characteristics
The clinical characteristics of the study cohort are reported in Table 2. The majority of patients were Hurley stage 1, which was not significantly different between PREG and White patients (P = 0.249). PREG were more likely to have two to five abscesses than White patients (20.3% of patients compared to 15.0%, P = 0.013). Similarly, PREG were more likely to have two to five inflammatory nodules (p = 0.003) and less likely to have no inflammatory nodules (p = 0.005). At the time of the survey, 25.7% of PREG and 21.5% of White patients were flaring, which was not significantly different. The mean number of flares in the 12 months prior to the survey was higher in PREG (2.2 ± 1.7) than in White patients (1.9 ± 1.7, p = 0.027).
TABLE 2.
Patient clinical characteristics.
| Overall | PREG | White patients | p‐Value | |
|---|---|---|---|---|
| Current Hurley stage a , n | 1787 | 399 | 1388 | |
| Stage 1, n (%) | 978 (54.7) | 209 (52.4) | 769 (55.4) | 0.249 (MW) |
| Stage 2, n (%) | 661 (37.0) | 153 (38.3) | 508 (36.6) | |
| Stage 3, n (%) | 148 (8.3) | 37 (9.3) | 111 (8.0) | |
| Number of abscesses, n | 1776 | 394 | 1382 | |
| None, n (%) | 955 (53.8) | 197 (50.0) | 758 (54.8) | 0.097 (FE) |
| 1, n (%) | 426 (24.0) | 90 (22.8) | 336 (24.3) | 0.593 (FE) |
| 2–5, n (%) | 287 (16.2) | 80 (20.3) | 207 (15.0) | 0.013 (FE) |
| >5, n (%) | 42 (2.4) | 11 (2.8) | 31 (2.2) | 0.572 (FE) |
| Number of inflammatory nodules, n | 1776 | 394 | 1392 | |
| None, n (%) | 694 (39.7) | 130 (33.0) | 564 (40.8) | 0.005 (FE) |
| 1, n (%) | 538 (30.3) | 118 (29.9) | 420 (30.4) | 0.901 (FE) |
| 2–5, n (%) | 396 (22.3) | 110 (27.9) | 286 (20.7) | 0.003 (FE) |
| 6–9, n (%) | 66 (3.7) | 14 (3.5) | 52 (3.8) | 1.000 (FE) |
| ≥10, n (%) | 16 (0.9) | 6 (1.5) | 10 (0.7) | 0.139 (FE) |
| Scarring, n | 1776 | 394 | 1392 | |
| Yes, n (%) | 1048 (59.0) | 246 (62.4) | 802 (58.0) | 0.131 (FE) |
| Patient flaring at data collection?, n | 1029 | 237 | 792 | 0.183 (FE) |
| Yes, n (%) | 231 (22.4) | 61 (25.7) | 170 (21.5) | |
| Number of flares in last 12 months, n | 839 | 179 | 660 | |
| Mean ± SD | 1.9 ± 1.7 | 2.2 ± 1.7 | 1.9 ± 1.7 | 0.027 (TT) |
| Patient‐reported most troublesome symptoms, n | 431 | 63 | 368 | |
| General pain/discomfort, n (%) | 102 (23.7) | 20 (31.8) | 82 (22.3) | 0.110 (FE) |
| Inflammation/redness of bumps/boils, n (%) | 99 (23.0) | 21 (33.3) | 78 (21.2) | 0.050 (FE) |
| Itching, n (%) | 79 (18.3) | 4 (6.4) | 75 (20.4) | 0.007 (FE) |
| Discharge/drainage from bumps/boils, n (%) | 69 (16.0) | 15 (23.8) | 54 (14.7) | 0.092 (FE) |
| Pain on sitting, n (%) | 55 (12.8) | 5 (7.9) | 50 (13.6) | 0.306 (FE) |
| Patient‐reported most bothersome body area affected, n | 501 | 66 | 435 | |
| Armpits, n (%) | 116 (23.2) | 15 (22.7) | 101 (23.2) | 1.000 (FE) |
| Groin, n (%) | 102 (20.4) | 17 (25.8) | 85 (19.5) | 0.252 (FE) |
| Genitals or pubic region, n (%) | 71 (14.2) | 17 (25.8) | 54 (12.4) | 0.007 (FE) |
| Buttocks, n (%) | 50 (10.0) | 4 (6.1) | 46 (10.6) | 0.376 (FE) |
| Breast and chest, n (%) | 35 (7.0) | 4 (6.1) | 31 (7.1) | 1.000 (FE) |
Abbreviations: FE, Fisher's exact test; MW, Mann–Whitney U‐test; PREG, people from racial and ethnic minority groups; SD, standard deviation; TT, t‐test.
Hurley stage 1, single or multiple abscesses without sinus tract formation or scarring; Hurley stage 2, recurrent abscesses with one or more sinus tracts and scarring widely separated by normal skin; Hurley stage 3, diffuse involvement with multiple sinus tracts and no intervening normal skin.
Bold values indicates significant P‐values <0.05.
White patients reported that their most bothersome symptom was general pain or discomfort (22.3%), whereas for PREG it was inflammation or redness of bumps and boils (33.3%). White patients were significantly more likely to report itching as a troublesome symptom compared to PREG (P = 0.007).
The most bothersome area reported also varied between ethnicity groups, with PREG reporting the groin regions (25.8%) and White patients reporting the armpits (23.2%). A greater proportion of PREG were more likely to report the genitals or pubic regions as their most bothersome area compared to White patients (25.8% compared to 12.4%, P = 0.007).
The level of agreement between patients and physicians on disease severity, trajectory, and impact was fair to moderate for both PREG and White patients (Figure S1).
3.3. Diagnostic journey
PREG first reported symptoms at 23.3 ± 10.8 years and White patients at 26.2 ± 11.1 years (P = 0.028) (Table 3). The time taken for PREG to see any physician about their symptoms was longer, after 2.6 ± 5.7 years compared to 1.2 ± 2.5 years for White patients (P < 0.001) following symptom onset. The most commonly reported reasons for seeing a physician were the patient worrying about their symptoms (70.7% of all patients) or being encouraged to see a physician by their family and/or friends (27.9% of all patients). PREG were more frequently encouraged to see a physician by their caregiver (11.7% compared to 2.5% of White patients, P < 0.001).
TABLE 3.
Patient‐reported diagnostic journey.
| Overall | PREG | White patients | p‐Value | |
|---|---|---|---|---|
| Age at first symptoms, n | 557 | 77 | 480 | |
| Years, mean ± SD | 25.8 ± 11.0 | 23.3 ± 10.8 | 26.2 ± 11.1 | 0.028 (TT) |
| Length of time before seeing physician, years, n | 497 | 59 | 438 | |
| Mean ± SD | 1.4 ± 3.1 | 2.6 ± 5.7 | 1.2 ± 2.5 | 0.001 (TT) |
| Median (IQR) | 0.3 (0.2–1.0) | 1.0 (0.1–2.0) | 0.3 (0.2–1.0) | |
| Reasons to see physician, n | 560 | 77 | 483 | |
| I decided myself to see a doctor because my HS symptoms were worrying me, n (%) | 396 (70.7) | 49 (63.6) | 347 (71.8) | 0.177 (FE) |
| I was encouraged to see a doctor by family and/or friends to discuss my HS symptoms, n (%) | 156 (27.9) | 23 (29.9) | 133 (27.5) | 0.682 (FE) |
| I was encouraged to see a doctor by my caregiver to discuss my HS symptoms, n (%) | 21 (3.8) | 9 (11.7) | 12 (2.5) | <0.001 (FE) |
| Another reason, n (%) | 9 (1.6) | 1 (1.3) | 8 (1.7) | 1.000 (FE) |
| Symptoms of particular worry prior to diagnosis, n | 564 | 78 | 486 | |
| Bumps/boils that didn't heal, n (%) | 365 (64.7) | 49 (62.8) | 316 (65.0) | 0.704 (FE) |
| Repeated outbreaks of bumps/boils, n (%) | 252 (44.7) | 49 (62.8) | 203 (41.8) | <0.001 (FE) |
| Appearance of pus/discharge, n (%) | 218 (38.7) | 32 (41.0) | 186 (38.3) | 0.707 (FE) |
| Bumps/boils started spreading to other areas, n (%) | 172 (30.5) | 41 (52.6) | 131 (27.0) | <0.001 (FE) |
| Bumps/boils started to smell, n (%) | 140 (24.8) | 28 (35.9) | 112 (23.1) | 0.023 (FE) |
| Bumps/boils started itching, n (%) | 136 (24.1) | 14 (18.0) | 122 (25.1) | 0.200 (FE) |
| Other things, n (%) | 12 (2.1) | 2 (2.6) | 10 (2.1) | 0.676 (FE) |
| Length of time to get diagnosed from first consultation, years n | 498 | 69 | 439 | |
| Mean ± SD | 1.6 ± 4.2 | 2.7 ± 5.3 | 1.5 ± 4.1 | 0.029 (TT) |
| Median (IQR) | 0.2 (0.0–1.0) | 0.5 (0.1–3.0) | 0.2 (0.0–1.0) | |
| Reported misdiagnosis, n | 517 | 73 | 444 | 0.801 (FE) |
| Yes | 239 (46.2) | 35 (48.0) | 204 (46.0) | |
| Most common misdiagnoses, n | 237 | 34 | 203 | |
| Boils, n (%) | 107 (45.2) | 25 (73.5) | 82 (40.4) | <0.001 (FE) |
| Acne, n (%) | 79 (33.3) | 9 (26.5) | 70 (34.5) | 0.434 (FE) |
| Furunculosis, n (%) | 54 (22.8) | 2 (5.9) | 52 (25.6) | 0.008 (FE) |
| Folliculitis, n (%) | 52 (21.9) | 6 (17.7) | 46 (22.7) | 0.656 (FE) |
| Skin infection, n (%) | 50 (21.1) | 6 (17.7) | 44 (21.7) | 0.820 (FE) |
| Was patient seen by specialist straight after diagnosis?, n | 553 | 75 | 478 | 0.099 (FE) |
| Yes, n (%) | 331 (59.9) | 38 (50.7) | 293 (61.3) | |
| Length of delay to see specialist, years, n | 209 | 34 | 175 | |
| Mean ± SD | 1.1 ± 2.7 | 1.2 ± 1.3 | 1.1 ± 2.9 | 0.794 (TT) |
| Median (IQR) | 0.3 (0.1–1.0) | 0.8 (0.3–2.0) | 0.3 (0.1–1.0) | |
| Time since diagnosis, years, n | 1247 | 257 | 990 | |
| Mean ± SD | 3.5 ± 4.5 | 2.7 ± 4.7 | 3.7 ± 4.5 | 0.002 (TT) |
| Median (IQR) | 2.0 (0.8–4.3) | 1.2 (0.2–3.6) | 2.2 (0.9–4.6) |
Abbreviations: FE, Fisher's exact test; HS, hidradenitis suppurativa; IQR, interquartile range; PREG, people from racial and ethnic minority groups; SD, standard deviation; TT, t‐test.
Bold values indicates significant P‐values <0.05.
The top reported initial symptom of particular worry in both groups was having bumps or boils that did not heal (62.8% of PREG, 65.0% of White patients, P = 0.704). PREG more frequently reported being worried about repeated outbreaks of bumps or boils (62.8% compared to 41.8% of White patients, P < 0.001), spreading of bumps or boils (52.6% compared to 27.0%, P < 0.001), and bumps or boils starting to smell (35.9% compared to 23.1%, P = 0.023).
Following first consultation with a physician, PREG took significantly longer to receive an HS diagnosis (2.7 ± 5.3 years), compared to White patients (1.5 ± 4.1 years, P = 0.029). Misdiagnoses occurred in 46.2% of cases, with no significant effect of ethnicity. Overall, the most commonly reported misdiagnoses were boils (45.2%), acne (33.3%), and furunculosis (22.8%). However, misdiagnosis with boils was significantly more common in PREG (P < 0.001), whereas furunculosis was more frequently diagnosed incorrectly in White patients (P = 0.008). The majority of patients (59.9%) were referred to a specialist immediately following an HS diagnosis, with no significant difference between ethnicity groups. For those that were not referred to a specialist immediately, the mean length of delay was 1.1 ± 2.7 years, with no significant effect of ethnicity. At the time of the survey, PREG were diagnosed more recently than White patients (2.7 ± 4.7 years ago compared to 3.7 ± 4.5 years, P = 0.002).
3.4. Impact of HS on daily life
Patient‐reported measures of the impact of HS on their daily lives are reported in Table 4. Almost half reported no impact on sleep, although 33.6% and 12.5% reported their sleep was impacted a little and quite a bit, respectively, with no difference between groups. Most patients reported experiencing pain due to their HS (67.6%), with PREG more likely to report higher levels of pain (P = 0.029). Accordingly, the worst level of pain in the last 24 h reported by PREG was significantly higher than that reported by White patients (P = 0.011), with means of 3.3 ± 2.6 compared to 2.5 ± 2.2 out of a score of 0 to 10 reported, respectively.
TABLE 4.
Patient‐reported impact of HS.
| Overall | PREG | White patients | p‐Value | |
|---|---|---|---|---|
| Impact on sleep in the last week, n | 562 | 77 | 485 | |
| Not at all, n (%) | 279 (49.6) | 33 (42.9) | 246 (50.7) | 0.189 (MW) |
| A little, n (%) | 189 (33.6) | 29 (37.7) | 160 (33.0) | |
| Quite a bit, n (%) | 70 (12.5) | 10 (13.0) | 60 (12.4) | |
| A lot, n (%) | 20 (3.6) | 3 (3.9) | 17 (3.5) | |
| A huge amount, n (%) | 4 (0.7) | 2 (2.6) | 2 (0.4) | |
| Amount of pain experienced due to HS in the last week, n | 561 | 77 | 484 | |
| Not at all, n (%) | 182 (32.4) | 18 (23.4) | 164 (33.9) | 0.029 (MW) |
| A little, n (%) | 254 (45.3) | 36 (46.8) | 218 (45.0) | |
| Quite a bit, n (%) | 95 (16.9) | 17 (22.1) | 78 (16.1) | |
| A lot, n (%) | 24 (4.3) | 3 (3.9) | 21 (4.3) | |
| A huge amount, n (%) | 6 (1.1) | 3 (3.9) | 3 (0.6) | |
| Worst level of pain in the past 24 h, n | 558 | 76 | 482 | |
| Mean ± SD | 2.6 ± 2.3 | 3.3 ± 2.6 | 2.5 ± 2.2 | |
| 0, no pain, n (%) | 140 (25.1) | 13 (17.1) | 127 (26.4) | 0.011 (MW) |
| 1, n (%) | 70 (12.5) | 8 (10.5) | 62 (12.9) | |
| 2, n (%) | 98 (17.6) | 14 (18.4) | 84 (17.4) | |
| 3, n (%) | 85 (15.2) | 10 (13.2) | 75 (15.6) | |
| 4, n (%) | 59 (10.6) | 9 (11.8) | 50 (10.4) | |
| 5, n (%) | 30 (5.4) | 7 (9.2) | 23 (4.8) | |
| 6, n (%) | 34 (6.1) | 2 (2.6) | 32 (6.6) | |
| 7, n (%) | 25 (4.5) | 8 (10.5) | 17 (3.5) | |
| 8, n (%) | 9 (1.6) | 2 (2.6) | 7 (1.5) | |
| 9, n (%) | 6 (1.1) | 1 (1.3) | 5 (1.0) | |
| 10, Worst possible pain, n (%) | 2 (0.4) | 2 (2.6) | 0 (0.00) | |
| DLQI, n | 552 | 76 | 476 | |
| Mean ± SD | 5.8 ± 5.4 | 6.9 ± 5.6 | 5.7 ± 5.3 | 0.076 (TT) |
| No effect: 0–1, n (%) | 144 (26.1) | 18 (23.7) | 126 (26.5) | n/a |
| Small effect: 2–5, n (%) | 152 (27.5) | 13 (17.1) | 139 (29.2) | |
| Moderate effect: 6–10, n (%) | 155 (28.1) | 30 (39.5) | 125 (26.3) | |
| Very large effect: 11–20, n (%) | 93 (16.8) | 14 (18.4) | 79 (16.6) | |
| Extremely large effect: 21–30, n (%) | 8 (1.4) | 1 (1.3) | 7 (1.5) | |
| HiSQOL, n | 515 | 65 | 450 | |
| Mean ± SD | 11.0 ± 10.6 | 12.7 ± 11.5 | 10.7 ± 10.5 | 0.167 (TT) |
| Median (IQR) | 8.0 (3.0–17.0) | 10.0 (4.0–18.0) | 8.0 (3.0–16.0) | |
| First quintile | 2 | 3 | 2 | |
| Second quintile | 6 | 7 | 6 | |
| Third quintile | 10 | 14 | 10 | |
| Fourth quintile | 19 | 21 | 19 | |
| Fifth quintile | 62 | 62 | 59 | |
| WPAI:GH | ||||
| Absenteeism, n | 343 | 45 | 298 | |
| Mean ± SD | 2.4 ± 10.9 | 3.2 ± 15.0 | 2.3 ± 10.2 | 0.607 (TT) |
| Presenteeism, n | 370 | 45 | 325 | |
| Mean ± SD | 16.1 ± 18.8 | 19.6 ± 18.2 | 15.6 ± 18.8 | 0.182 (TT) |
| Overall work impairment, n | 340 | 43 | 297 | |
| Mean ± SD | 17.7 ± 20.2 | 20.8 ± 18.3 | 17.3 ± 20.5 | 0.287 (TT) |
| Overall activity impairment, n | 551 | 74 | 477 | |
| Mean ± SD | 20.9 ± 21.4 | 27.0 ± 25.2 | 20.0 ± 20.6 | 0.008 (TT) |
| EQ‐VAS, n | 550 | 374 | 476 | |
| Mean ± SD | 78.2 ± 16.5 | 77.1 ± 14.7 | 78.3 ± 16.7 | 0.552 (TT) |
| EQ‐5D‐5L US TTO, n | 549 | 74 | 475 | |
| Mean ± SD | 0.86 ± 0.2 | 0.82 ± 0.2 | 0.86 ± 0.2 | 0.045 (TT) |
Abbreviations: DLQI, Dermatology Life Quality Index; EQ‐VAS, EQ‐5D‐5L Visual Analogue Scale; HiSQOL, Hidradenitis Suppurativa Quality of Life; HS, hidradenitis suppurativa; IQR, interquartile range; MW, Mann–Whitney U‐test; PREG, people from racial and ethnic minority groups; SD, standard deviation; TT, t‐test; TTO, time trade‐off model; VAS, Visual Analogue Scale; WPAI:GH, Work Productivity and Activity Impairment: General Health.
Bold values indicates significant P‐values <0.05.
General quality of life was measured using the dermatology‐specific DLQI patient reported outcome measure, with PREG and White patients recording scores of 6.9 ± 5.6 and 5.7 ± 5.3, respectively, representing moderate effects on life, with no significant difference seen. Patients recorded a score of 11.0 ± 10.6 on the HS‐specific HiSQOL measure, with PREG scoring 12.7 ± 11.5, compared to 10.7 ± 10.5 in White patients, which was not significantly different.
Impact on work and general activity was measured using the WPAI:GH measure. Absenteeism was low, with PREG reporting work time missed of 3.2 ± 15.0% and White patients reporting 2.3 ± 10.2% of work time missed (P = 0.607). Presenteeism or impairment at work/reduced on‐the‐job effectiveness was higher for PREG at 19.6 ± 18.2% compared to 15.6 ± 18.8% for White patients (P = 0.182). Combined, these led to overall work impairments of 20.8 ± 18.3% and 17.3 ± 20.5% for PREG and White patients, respectively (P = 0.287). Overall activity impairment, including those who did not work, was significantly higher in PREG, at 27.0 ± 25.2%, compared to 20.0 ± 20.6% in White patients (P = 0.008).
Quality of life was also assessed using the EQ‐5D‐5L USA time trade‐off model, with PREG scoring 0.820 ± 0.2 compared to 0.864 ± 0.2 in White patients, which was not significantly different.
3.5. Disease management and treatment goals
Figure 1 shows the proportion of patients who agreed with statements covering their disease experience. PREG showed greater agreement with “I would change my doctor if I felt that he/she was not willing to try new treatments” (P = 0.0145), “I am very concerned about the possible side effects of my HS treatment” (P = 0.0271), and “I would like more support with management of my HS and other conditions” (P = 0.0062), but agreed less with knowing nothing about HS prior to diagnosis (P = 0.0023).
FIGURE 1.
Proportions of patients who agreed with statements about their disease. Agreement was scored on a scale of 1 to 10, where 1 = completely disagree and 10 = completely agree. Data are the mean of agreement scores with bars indicating standard deviation. Categorical values were compared using Mann–Whitney U‐tests. HS, hidradenitis suppurativa; PREG, people from racial and ethnic minority groups.
Figure S2 shows treatment goals by patient group, and agreement between patients and physicians on their importance. Agreement between patients and physicians was none to slight in PREG but fair for White patients on treatments to improve the appearance of skin, relieve pain or discomfort, and be safe to take. There was fair agreement in both groups on the need for treatments to work quickly, relieve itching, and be easy to take.
3.6. Satisfaction with treatment
The majority of both patients and physicians were satisfied with their treatment, with fair to moderate agreement (Figure S3). The most frequently reported reasons for treatment dissatisfaction amongst physicians was a lack of efficaciousness in reducing patient symptoms (43.3%), a lack of prevention of flares (26.8%), and a general lack of efficacy (17.3%) (Table 5). There was no significant effect of patient ethnicity on physician reasons for dissatisfaction. The most common reason for patients to be dissatisfied with their treatment was the fact the treatment had not helped the HS on certain areas of their body. PREG were significantly more likely to feel their HS was still visible to other people than White patients (37.5% compared to 17.1%, P = 0.0482) as a reason for dissatisfaction.
TABLE 5.
Reasons for treatment dissatisfaction.
| Overall | PREG | White patients | p‐Value | |
|---|---|---|---|---|
| Physician‐reported reasons for dissatisfaction (most common), n | 127 | 21 | 106 | |
| Not effective enough at reducing patient's symptoms, n (%) | 55 (43.3) | 8 (38.1) | 47 (44.3) | 0.638 (FE) |
| Does not prevent flares, n (%) | 34 (26.8) | 8 (38.1) | 26 (24.5) | 0.279 (FE) |
| Lack of efficacy, n (%) | 22 (17.3) | 3 (14.3) | 19 (17.9) | 0.588 (FE) |
| Not effective enough at reducing patient's pain, n (%) | 19 (15.0) | 4 (19.0) | 15 (14.2) | 1.000 (FE) |
| Efficacy diminished over time, n (%) | 18 (14.2) | 5 (23.8) | 13 (12.3) | 0.518 (FE) |
| Patient‐reported reasons for dissatisfaction (most common), n | 141 | 24 | 117 | |
| It has not helped the HS on certain areas of my body, n (%) | 43 (30.5) | 10 (41.7) | 33 (28.2) | 0.226 (FE) |
| It is not working quickly enough, n (%) | 40 (28.4) | 9 (37.5) | 31 (26.5) | 0.322 (FE) |
| I still get flares, n (%) | 39 (27.7) | 5 (20.8) | 34 (29.1) | 0.465 (FE) |
| I think there are better medicines, n (%) | 29 (20.6) | 7 (29.2) | 22 (18.8) | 0.272 (FE) |
| My HS is still visible to other people, n (%) | 29 (20.6) | 9 (37.5) | 20 (17.1) | 0.048 (FE) |
Abbreviations: FE, Fisher's exact test; HS, hidradenitis suppurativa; PREG, people from racial and ethnic minority groups.
Bold values indicates significant P‐values <0.05.
4. DISCUSSION
HS is a common inflammatory skin condition with significant impact on patients' quality of life. Despite this, diagnostic delays are frequent and there are few efficacious treatment options. Here, we have used the results of a large, multinational survey of HS patients and their physicians to characterize the patient experience throughout their diagnosis and treatment, with a particular emphasis on the influence of patient ethnicity in Europe and the USA.
PREG in our study showed evidence of more severe disease, with greater numbers of abscesses and inflammatory nodules, as well as more frequent flares during the survey period than White patients. These data indicate, for the first time, that a wide range of PREG in a multinational sample beyond the USA show greater symptom burden than White patients.
As delayed diagnosis may impact disease severity, 30 we investigated the role of ethnicity during the diagnostic journey. PREG reported first symptoms at a younger mean age than White patients but the time to first consultation with a physician about these symptoms was twice as long. Significant delays between experiencing first symptoms and seeing a physician have been noted before in HS, 10 but the role of ethnicity in this delay had not yet been quantified prior to this study.
Poor engagement with healthcare professionals has previously been described as a factor contributing to diagnostic delay. 31 However, PREG face additional barriers to healthcare consultations compared to White patients, such as access issues and limited local healthcare resources, a lack of cultural understanding between healthcare professionals and patients, as well as language barriers, which may contribute to their additional delay in seeing a physician. 32 , 33 Mistrust of medical professionals, frequently observed at higher levels in PREG than in White patients, 34 may also lead to delays in seeking treatment.
Although the most commonly reported symptom of worry prior to diagnoses were bumps or boils that did not heal, PREG reported being worried about a wider range of symptoms. This may be due to their disease being at a more advanced state at diagnosis or may represent a different presentation of the disease in PREG.
Adding to the time to initially seeing a physician, PREG also experienced a significantly longer delay in receiving a correct diagnosis, having to wait almost twice as long as White patients. This is in line with previous work showing significant delays in diagnoses in a variety of skin conditions in PREG, likely due to, amongst other things, physicians receiving inadequate exposure to dermatological presentations in PREG during training. 35 It is likely these later consultations and delayed diagnoses contributed to the worse disease outcomes we see in PREG through patients not receiving efficacious treatments as early as possible and their disease progressing to a greater severity.
Although misdiagnoses were common in this cohort, in agreement with previous literature, 36 there was no impact of race and ethnicity on the rate of misdiagnoses in our study. While the total rates of misdiagnoses were not different between ethnicities in our cohort, there were significant differences in the types of misdiagnoses received, possibly reflecting some level of inexperience with dermatological conditions of PREG skin amongst diagnosing healthcare professionals. Once a correct diagnosis was made, a significant proportion of patients still faced an additional delay of over a year to see a specialist. However, there was no impact of ethnicity in our cohort in this time, suggesting that once patients are on a management pathway for HS, ethnicity becomes a less important factor in treatment delays.
Overall, the most burdensome symptom reported was pain, which matches earlier literature. 7 , 37 , 38 However, PREG reported more inflammation and less itching compared to White patients. Although a specific impact of ethnicity on itching has not been described in HS previously, it has been noted that Black skin may be more sensitive to chronic itch in general, 39 which contrasts with our findings. It may also be that White patients are more likely to attribute their itch specifically to their HS than PREG. Additionally, PREG reported more involvement of sensitive regions such as the genitals or pubic region. Involvement of different body regions in PREG populations has been noted before, although the reasons for this are unclear. 40 Further investigation of the potentially different presentations of HS in PREG and White patients may shed more light on these differences.
Interestingly, despite their delayed diagnoses and worse outcomes, PREG appeared to be more engaged and proactive with their treatment. Although most patients reported not knowing anything about HS prior to their condition, PREG had a greater awareness of HS at diagnosis compared to White patients. PREG also seemed to interact with their physicians differently, being more likely to say they would change physicians to gain access to new treatments and wanted more support with their HS. This may reflect a different patient–physician relationship, as also evidenced by lower levels of agreement between PREG and their physicians on disease severity than White patients, and more PREG rating their disease severity, progression, and impact on life as worse than their physicians.
The majority of patients reported a moderate to great impact of their HS on their daily lives. This is in line with existing literature; in a recent, multinational study, patients indicated significant severity‐dependent impact of their HS on multiple aspects of daily life. 41 Qualitative interviews show HS patients frequently experience shame about their condition, 42 , 43 indicate pain and a lack of improvement in quality of life as significant issues, 7 , 44 and develop extensive coping strategies in daily life. 43 , 45
Furthermore, over half of patients reported some impact on their sleep. Despite this, our recorded mean DLQI scores were lower than most reported values in the literature, which range from 8.4 to 13.2, 46 , 47 , 48 suggesting patients were only moderately affected by their disease. This moderate disease impact is supported by the relatively low HiSQOL scores recorded by this cohort. It was also shown that HS had an impact on overall work and activity impairment, with PREG experiencing greater activity impairment. This cohort may not truly represent the overall HS population, as patients who consult frequently perhaps are more likely to be included in the sample.
The majority of both physicians and patients reported being satisfied with their treatment, despite patients reporting significant remaining burden. However, the level of patient–physician agreement on treatment satisfaction was lower in PREG, and almost twice as many PREG as White patients were less satisfied than their physicians. This may partially be a consequence of unclear understanding of treatment goals. In less than 15% of cases, patients or physicians thought better disease control could be achieved. This may reflect limited treatment options or the fact patients and physicians have settled for the limited improvement in symptoms that was achieved. Lack of efficaciousness in reducing symptoms was the most common physician‐reported reason for treatment dissatisfaction, highlighting the continued unmet clinical need in this patient population. In patients, lack of efficacy in certain body areas was the main reason for dissatisfaction.
Further limitations of this study include the fact that patient eligibility was based on the judgment of the respondent physician and not on a formalized diagnostic checklist; however, it is representative of the physician's real‐world classification of their patients. Selection bias was minimized through the requirement for a consecutive series of eligible patients. Recall bias, a common limitation of surveys, might also have affected the responses of both physicians and patients. However, physicians did have the ability to refer to the patients' records when returning data, thus reducing this risk.
In conclusion, our study highlights the impact of delayed diagnoses in showing considerable remaining unmet clinical need in HS patients in Europe and the USA, even in a population which does not score highly for disease severity on standardized patient reported outcome measures. Although all patients experienced significant diagnostic delay, PREG were additionally impacted by, and showed indicators of, more severe disease.
The remaining disease burden highlighted by our study makes clear the need for earlier diagnosis, which may be achieved through better disease understanding and clearer communication. Improved disease recognition, diagnosis, and treatment, particularly for PREG, will improve patient outcomes and reduce disease burden.
CONFLICT OF INTEREST STATEMENT
Tarannum Jaleel is an investigator for UCB and Eli Lilly, consults for Eli Lilly and Chemocentryx and receives honoraria, has received funds from Pfizer and UCB for research fellow support, and has received funds from Dermatology Foundation, Skin of Color Society, and NIH K12 (grant number: K12HD043446). Beth Mitchel, Russel Burge, and Dipak Patel are employees of Eli Lilly and Company and minor shareholders of Eli Lilly stock. Andrea Cohee is an employee of Eli Lilly and Company. Hayley Wallinger, Isabel Truman, and Aaron Keal are employees of Adelphi Real World, Bollington, UK.
Supporting information
Figure S1.
Figure S2.
Figure S3.
ACKNOWLEDGMENTS
Eli Lilly and Company did not influence the original survey through either contribution to the design of questionnaires or data collection. The analysis described here used data from the Adelphi Real World HS DSP. The DSP is a wholly owned Adelphi Real World product. Eli Lilly and Company is one of multiple subscribers to the DSP. Publication of survey results was not contingent on the subscriber's approval or censorship of the manuscript. Medical writing support under the guidance of the authors was provided by Dr Niels Haan on behalf of Adelphi Real World in accordance with Good Publication Practice guidelines. 49
Jaleel T, Mitchell B, Burge R, Cohee A, Wallinger H, Truman I, et al. Exploring racial and ethnic disparities in the hidradenitis suppurativa patient disease journey: Results from a real‐world study in Europe and the USA. J Dermatol. 2024;51:1547–1558. 10.1111/1346-8138.17386
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Associated Data
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Supplementary Materials
Figure S1.
Figure S2.
Figure S3.