Abstract
Introduction:
Pain is the most impactful symptom of hidradenitis suppurativa (HS), and understanding its management practices can guide improvements in care. This study aims to describe HS pain severity and associated factors, evaluate pain management practices, and identify barriers to pain management.
Methods:
A cross-sectional survey of self-identified adults with HS was conducted from 6/13/2021 to 6/30/2021. Participants were 18 years or older with a confirmed HS diagnosis by a medical provider or a validated questionnaire. Exposures: demographic, clinical factors. Primary outcomes: quality of life (QoL), assessed using the Skindex Mini (0–18 scale), and pain severity, measured via numerical rating scale (NRS, 0–10). Secondary outcomes: pain treatments used and barriers to care.
Results:
890 eligible respondents resided in 5 countries. 96.9% self-identified as female, 74.0% White, 8.3% Black, 2.6% Asian, 5.3% Hispanic, 1.3% American Indian and Native Alaskan, and 7.1% mixed race. Moderate (NRS 4–6) and severe pain (NRS≥7) were significantly associated with reduced QoL, with Skindex Mini scores that were higher for moderate (14.6; 95% CI: 14.0, 15.2) and severe pain (16.1; 95% CI: 15.4, 16.7) compared to mild pain on average (NRS≤3, 10.8; 95% CI: 10.3, 11.3). Younger age, Asian race, difficulty accessing care, and severe disease were independently associated with higher pain (p≤0.002 for all). Reported barriers to pain management included providers not asking about pain, poor provider knowledge, and perceived unwillingness to treat pain. 38.4% of participants reported they had never received a prescription for pain medication. Pain prescriptions were most commonly received from primary care physicians (22.5%) or dermatologists (13.3%), with severe pain linked to increased use of opioids, tramadol, and antiepileptics to treat HS pain (p<0.05 for all).
Conclusion:
Pain in HS is linked to lower QoL and barriers to management, emphasizing the need for evidence-based, patient-centered approaches to enhance pain care and address treatment gaps.
Keywords: hidradenitis suppurativa, acne inversa, pain, barriers to care, access to care
Introduction
Hidradenitis suppurativa (HS) is a prevalent and debilitating chronic inflammatory disease that causes recurrent painful nodules, abscesses, and tunnels in the groin, axillae, buttocks, and inframammary folds [1–4]. HS disproportionately affects women and African Americans [5] and is associated with increased morbidity [6–9], mental health comorbidities [10], mortality [11–13], shame [14, 15], stigma [14–16], and physical pain [10], leading to profound social isolation and negative impacts on quality of life (QoL) [13].
Pain is cited as the most impactful symptom of HS and a primary factor in the QoL of those living with it [17], hindering physical mobility, psychological well-being, and social interactions [13, 18]. Despite these profound effects, HS pain is underrecognized, undertreated, and stigmatized by clinicians, leading patients to frequently treat their pain without provider input [19, 18]. People living with HS are at elevated risk of substance misuse, including chronic opioid use, which could be related to under-management of HS pain [20–22]. Given the substantial impact of HS pain on QoL, treatment of HS pain is an essential component of patient-centered care in HS.
While prior research has highlighted the prevalence of pain in HS [10, 22] and its impacts on QoL [23, 18], limited studies comprehensively evaluate the demographic, clinical, and other healthcare-related factors contributing to HS pain severity. Though studies have highlighted patient-reported pain management practices [19, 24, 25, 18], the barriers faced in accessing adequate pain relief are under-explored.
This study aims to address these gaps by (1) describing pain severity and factors associated with increased pain severity, including demographic and disease characteristics as well as healthcare-related factors; (2) evaluating patient-reported pain management strategies; and (3) assessing barriers to effective pain management. This investigation seeks to inform future patient-centered interventions and improve care for individuals suffering from HS pain.
Methods
Study Design and Population
We conducted a retrospective, cross-sectional study of 1040 surveyed participants who self-identified as having HS from Facebook HS support groups from June 13, 2021 to June 30, 2021. An anonymous volunteer sample was used for participant selection. Eligible participants were at least 18 years old and reported confirmed HS diagnosis by a provider or completed validated screening questions [26], and completed pain-related questions. Surveys with less than 10% completion were removed from the analysis, resulting in 890 participants for final analysis. The University of California, San Francisco Institutional Review Board (Protocol #19–27407) approved the survey, and participants provided informed consent. Complete details of the 35-item survey design, administration on Facebook, and data preparation were previously reported.[27] Facebook’s “Post Reach” metric [28], which estimates the number of individuals exposed to the post, was used to quantify the survey response rate of 20.1%.
Outcomes
Key outcomes included QoL, average pain severity, pain medication(s), and barriers to HS pain care. QoL was measured as a continuous variable (validated Skindex Mini score of 0–18) [29, 30]. Pain severity, both average (avgPain) and worst pain in 24 hours (wPain), was measured as both a continuous variable (Numeric Rating Scale, NRS of 0–10) [31] and an ordinal variable categorized into mild (0–3), moderate (4–6), and severe (7–10) pain, as previously described [22]. Secondary outcomes of pain medication type and barriers to HS pain care were measured as categorical variables.
Statistical Analysis
We used non-parametric summary statistics to report participant characteristics and outcomes. Comparisons between groups were performed using signed-rank tests. For continuous and categorical variables, p-values were calculated using the Kruskal-Wallis test, chi-square test, or Fisher’s exact test. The Benjamini-Hochberg correction was used to control the false discovery rate at 0.05 in multiple comparison analyses. Both unadjusted and multivariable linear regression models were employed to examine associations between explanatory and outcome variables. Multivariable linear regression models were adjusted for potential confounders identified for clinical relevance and prior literature, and selected to minimize the number of variables while explaining the most variability in the outcome. All statistical analyses were conducted using Stata statistical software (version 17.0, StataCorp LLC, College Station, TX), with a significance threshold set at p < 0.05. We performed a complete case analysis; participants with missing responses to key exposure or outcome variables were excluded. No imputation methods were used. Methods adhered to Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) guidelines (Supplementary Table 1) [32].
Results
Participants
Of the 890 eligible participants with representation across 5 continents (Supplementary Fig. 1), 862 were female (96.9%) and 74.0% self-identified as White, 8.3% Black, 2.6% Asian, 5.3% Hispanic, and 7.1% Mixed race. Most participants were employed outside the home full-time (53.7%), though 16.3% were unemployed or disabled. The majority of participants had either private or public/government insurance (47.8% and 33.3%, respectively), while 15.1% were uninsured. Nearly 80% of participants reported moderate to severe pain on average (79.1%, n=704) (Table 1).
Table 1.
Participant Characteristics Stratified by Average Pain Severity.
| Total [n=890] |
Mild Pain NRS≤3 [n=186] |
Moderate Pain NRS 4–6 [N=422] |
Severe Pain NRS≥7 [N=282] |
p-value* | |||||
|---|---|---|---|---|---|---|---|---|---|
| Characteristic | N | (%) | N | (%) | N | (%) | N | (%) | |
| Age (median, IQR) | 36 | (29, 43) | 37 | (30, 46) | 36 | (29, 43) | 35 | (28, 41) | 0.03** |
| Disease duration (median, IQR) | 17 | (11, 24) | 15.5 | (10, 23) | 17 | (11, 25) | 17 | (10, 24) | 0.49 |
| Sex (n,%) | 0.96† | ||||||||
| Male | 26 | (2.9) | 5 | (2.7) | 14 | (3.3) | 7 | (2.5) | |
| Female | 862 | (96.9) | 181 | (97.3) | 406 | (96.2) | 275 | (97.5) | |
| Intersex | 1 | (0.1) | 0 | (0) | 1 | (0.2) | 0 | (0) | |
| Declined to answer | 1 | (0.1) | 0 | (0) | 1 | (0.2) | 0 | (0) | |
| Race/Ethnicity (n,%) | 0.003 | ||||||||
| White | 659 | (74.0) | 151 | (81.2) | 327 | (77.5) | 181 | (64.2) | |
| Black | 74 | (8.3) | 17 | (9.1) | 26 | (6.2) | 31 | (11.0) | |
| Asian | 23 | (2.6) | 1 | (0.5) | 10 | (2.4) | 12 | (4.3) | |
| Hispanic | 47 | (5.3) | 8 | (4.3) | 19 | (4.5) | 20 | (7.1) | |
| American Indian, Native Alaskan | 12 | (1.3) | 1 | (0.5) | 5 | (1.2) | 6 | (2.1) | |
| Native Hawaiian or Other Pacific Islander | 1 | (0.1) | 0 | (0) | 0 | (0) | 1 | (0.4) | |
| Mixed race | 63 | (7.1) | 7 | (3.8) | 31 | (7.3) | 25 | (8.9) | |
| Other, unknown, or declined to answer | 12 | (1.3) | 1 | (0.5) | 4 | (0.9) | 7 | (2.5) | |
| Employment | 0.005 | ||||||||
| Full time | 478 | (53.7) | 112 | (60.2) | 232 | (55.0) | 134 | (47.5) | |
| Part time | 96 | (10.8) | 21 | (11.3) | 43 | (10.2) | 32 | (11.3) | |
| Unemployed/Disabled | 145 | (16.3) | 19 | (10.2) | 60 | (14.2) | 66 | (23.4) | |
| Other | 171 | (19.2) | 34 | (18.3) | 87 | (20.6) | 50 | (17.7) | |
| Insurance type | 0.001 | ||||||||
| Private | 425 | (47.8) | 111 | (59.7) | 204 | (48.3) | 110 | (39.0) | |
| Public/Government | 296 | (33.3) | 52 | (28.0) | 134 | (31.8) | 110 | (39.0) | |
| Other | 35 | (3.9) | 7 | (3.8) | 14 | (3.3) | 14 | (5.0) | |
| None | 134 | (15.1) | 16 | (8.6) | 70 | (16.6) | 48 | (17.0) | |
| Primary HS Provider | 0.02 | ||||||||
| Dermatologist | 440 | (49.4) | 85 | (45.7) | 201 | (47.6) | 154 | (54.6) | |
| Primary care provider | 212 | (23.8) | 60 | (32.3) | 97 | (23.0) | 55 | (19.5) | |
| Surgeon | 36 | (4.0) | 7 | (3.8) | 19 | (4.5) | 10 | (3.5) | |
| Other | 65 | (7.3) | 5 | (2.7) | 37 | (8.8) | 23 | (8.2) | |
| None | 137 | (15.4) | 29 | (15.6) | 68 | (16.1) | 40 | (14.2) | |
| Pain medication prescriber | 0.15 | ||||||||
| Dermatologist | 118 | (13.3) | 21 | (11.3) | 58 | (13.7) | 39 | (13.8) | |
| Primary care provider | 200 | (22.5) | 44 | (23.7) | 92 | (21.8) | 64 | (22.7) | |
| Surgeon | 82 | (9.2) | 18 | (9.7) | 38 | (9.0) | 26 | (9.2) | |
| Emergency department | 93 | (10.4) | 14 | (7.5) | 43 | (10.2) | 36 | (12.8) | |
| Other | 55 | (6.2) | 6 | (3.2) | 24 | (5.7) | 25 | (8.9) | |
| None | 342 | (38.4) | 83 | (44.6) | 167 | (39.6) | 92 | (32.6) | |
| Access to dermatologic care | 0.001 | ||||||||
| Very easy or Easy | 255 | (28.7) | 72 | (38.7) | 109 | (25.9) | 74 | (26.2) | |
| Neutral | 240 | (27.0) | 46 | (24.7) | 117 | (27.8) | 77 | (27.3) | |
| Difficult | 239 | (26.9) | 48 | (25.8) | 126 | (29.9) | 65 | (23.0) | |
| Very difficult | 155 | (17.4) | 20 | (10.8) | 69 | (16.4) | 66 | (23.4) | |
| Hurley stage | <0.001 | ||||||||
| I | 56 | (6.3) | 24 | (12.9) | 22 | (5.2) | 10 | (3.5) | |
| II | 475 | (53.4) | 118 | (63.4) | 237 | (56.2) | 120 | (42.6) | |
| III | 307 | (34.5) | 31 | (16.7) | 139 | (32.9) | 137 | (48.6) | |
| Patient Global Assessment | <0.001 | ||||||||
| None, minimal, or mild | 119 | (13.4) | 62 | (33.3) | 40 | (9.5) | 17 | (6.0) | |
| Moderate | 443 | (49.8) | 102 | (54.8) | 251 | (59.5) | 90 | (31.9) | |
| Severe | 255 | (28.7) | 20 | (10.8) | 114 | (27.0) | 121 | (42.9) | |
| Very Severe | 73 | (8.2) | 2 | (1.1) | 17 | (4.0) | 54 | (19.1) | |
| Skindex Mini score (median, IQR) | 15 | (12, 18) | 12 | (8, 14) | 15 | (13, 18) | 18 | (15, 18) | <0.001** |
p-values calculated using chi-square test unless otherwise indicated.
p-value calculated using Kruskal-Wallis test.
p-value calculated using Fisher’s exact test.
Pain is Associated with Reduced QoL
Median reported wPain did not differ from avgPain (6, IQR 3–7 vs 5, IQR 4–7; p=0.56). When pain was categorized into mild (0–3), moderate (4–6), and severe (7–10), increasing wPain and avgPain were both associated with higher Skindex Mini scores, translating to worse QoL.
Unadjusted Skindex Mini scores were higher for moderate wPain (14.6; 95% CI: 14.0, 15.2; p<0.001) and severe wPain (16.5; 95% CI: 15.9, 17.0; p<0.001) compared to mild wPain (11.0; 95% CI: 10.6, 11.4). A similar association was noted for moderate (14.6; 95% CI: 14.0, 15.2) and severe avgPain (16.1; 95% CI: 15.4, 16.7) compared to mild avgPain (10.8; 95% CI: 10.3, 11.3; p<0.001) (Supplementary Fig. 2).
Participant Characteristics and Poor Access to Dermatologic Care Are Associated with HS Pain
Both univariate and multivariate analyses revealed associations between participant characteristics and avgPain scores (Table 2). In the univariate analysis, younger age was associated with higher pain scores, with each additional year of age corresponding to a decrease of 0.02 in avgPain (95% CI: −0.04, −0.01; p=0.003). This association remained significant in the multivariate model (−0.02 points; 95% CI: −0.03, −0.01; p=0.002). Univariate analysis identified significantly higher pain scores among Asian patients compared to White patients (1.61 points; 95% CI: 0.67, 2.54; p=0.001), a finding that persisted in the multivariate analysis, although slightly attenuated (1.32 points; 95% CI: 0.50, 2.14; p=0.002). Mixed-race patients also showed significantly higher pain scores in the univariate analysis (0.70 points; 95% CI: 0.12, 1.28; p =0.019), but this relationship was not significant in the multivariate model.
Table 2.
Linear Regression Models of Participant Characteristics Associated with Average Pain.
| Univariate Analysis | Multivariate Analysis | |||||
|---|---|---|---|---|---|---|
| Variable | Coefficient | 95% CI | p-value | Coefficient | 95% CI | p-value |
| Age | −0.02 | (−0.04, −0.01) | 0.003 | −0.02 | (−0.03, −0.01) | 0.002 |
| Race (relative to White) | ||||||
| Black | 0.47 | (−0.07, 1.01) | 0.087 | 0.19 | (−0.28, 0.67) | 0.432 |
| Asian | 1.61 | (0.67, 2.54) | 0.001 | 1.32 | (0.50, 2.14) | 0.002 |
| Hispanic | 0.61 | (−0.05, 1.28) | 0.072 | 0.40 | (−0.18, 0.99) | 0.176 |
| American Indian, Native Alaskan, Native Hawaiian, and Pacific Islander | 1.24 | (−0.04, 2.52) | 0.058 | 0.72 | (−0.40, 1.84) | 0.207 |
| Mixed Race | 0.70 | (0.12, 1.28) | 0.019 | 0.46 | (−0.05, 0.97) | 0.076 |
| Other, Unknown, or Declined | 1.07 | (−0.21, 2.36) | 0.101 | 0.99 | (−0.17, 2.16) | 0.095 |
| Access to dermatologic care (relative to Easy or Very Easy) | ||||||
| Neutral | 0.50 | (0.11, 0.90) | 0.013 | 0.20 | (−0.15, 0.55) | 0.266 |
| Difficult | 0.43 | (0.03, 0.83) | 0.034 | 0.31 | (−0.04, 0.66) | 0.082 |
| Very Difficult | 1.18 | (0.73, 1.62) | <0.001 | 0.80 | (0.40, 1.20) | <0.001 |
| Patient Global Assessment (relative to None, minimal, or mild) | ||||||
| Moderate | 1.50 | (1.10, 1.90) | <0.001 | 1.45 | (1.05, 1.85) | <0.001 |
| Severe | 2.82 | (2.38, 3.25) | <0.001 | 2.71 | (2.28, 3.14) | <0.001 |
| Very Severe | 4.11 | (3.53, 4.69) | <0.001 | 4.04 | (3.46, 4.61) | <0.001 |
Similarly, difficulties accessing dermatologic care were associated with higher pain scores. “Very Difficult” access to care showed a significant association in both univariate (1.18 points; 95% CI: 0.73, 1.62; p<0.001) and multivariate analyses (0.80 points; 95% CI: 0.40, 1.20; p<0.001) when compared to easy and very easy access. Disease severity was the strongest predictor of pain scores in both models. Patients reporting “Very Severe” disease had avgPain scores 4.11 points higher in the univariate analysis (95% CI: 3.53, 4.69; p<0.001) and 4.04 points higher in the multivariate model (95% CI: 3.46, 4.61; p<0.001) when compared to none, minimal, or mild pain.
Barriers to Care for HS Pain
The top five barriers to obtaining care for HS pain included 1) medical professionals not asking about HS pain, 2) primary HS providers lacking knowledge about HS pain management, 3) fear of discrimination from providers when asking for pain medications, 4) primary HS providers unwilling to prescribe pain medications, and 5) recommended medications failing to alleviate pain (Fig. 1).
Fig. 1. Patient-reported barriers to obtaining care for HS pain.
The number of survey respondents with hidradenitis suppurativa who cite each barrier is depicted. The top five barriers are highlighted in green.
Bar graph depicting the number of survey respondents with hidradenitis suppurativa who cite each barrier to HS pain care. The top five barriers are highlighted in green.
Systemic barriers reported included limited access to pain management specialists and cost-related difficulties in filling prescriptions. Logistical issues, such as difficulties obtaining electronic prescriptions or unavailable medications at pharmacies, also posed obstacles.
Differences in Pain Medication Prescription Rates by Provider and Prescriber Type
Nearly 40% (n=342) of the 890 participants with HS reported they had not been prescribed pain medications for their HS pain (Fig. 2. a). Overall, most participants received pain medication prescriptions from a PCP (22.5%, n=200) or a dermatologist (13.3%, n=118); a smaller proportion received pain medication from acute care providers (10.5%, n=93), surgeons (9.2%, n=82), and other providers (6.18%, n=55).
Fig. 2. Distribution of pain medication prescribers for survey respondents.
a) Bar graph showing the number of participants (n) who report a given provider as their primary HS pain medication prescriber. b) Stacked bar graphs show the number of participants (n) by primary HS provider type, with each bar segment representing the number of participants prescribed pain medication by a specific provider. Bars are color-coded to indicate pain medication prescribers: Dermatologists (Derm), Primary Care Physicians (PCPs), Surgeons, Emergency Department/Urgent Care (ED/Urgent), Other, or None. “Other pain medication prescribers” include Pain specialists, Palliative care specialists, Rheumatologists, Infectious disease doctors, Psychiatrists, Naturopathic/ayurvedic/herbalist doctors, and Acupuncturists. “Other primary HS providers” include Rheumatologists, Infectious disease doctors, Psychiatrists, Nutritionists, Gastroenterologists, Naturopathic/ayurvedic/herbalist doctors, Emergency physicians, or Urgent care.
Color-coded bar graphs depicting a) the number of participants (n) who report a given provider as their primary HS pain medication prescriber and b) the number of participants stratified by primary HS provider type, with each bar segment representing the number of participants prescribed pain medication by a specific provider.
Dermatologists were the most common primary HS provider (49.4%, n=440/890). However, 34.8% (n=153/440) of participants who reported a dermatologist as their primary HS provider had not received a pain medication prescription. Only 23.2% (n=102/440) received pain medication prescriptions from their dermatologist, while 19.3% (n=85/440) received pain medication prescriptions from a PCP (Fig. 2. b).
Among participants who reported that their primary HS provider was a PCP (23.8%, n=212/890), a greater proportion of participants (42.0%, n=89/212) had not received a pain medication prescription compared to those primarily managed by dermatologists. PCPs were the primary pain medication prescribers for this group (35.9%, n=76/212), but 9.0% (n=19/212) of participants sought pain medication prescriptions from acute care providers (Fig. 2. b).
Participants without a primary HS provider (15.4%, n=137/890) had the lowest access to pain treatment; 56.2% (n=77/137) had not received pain medications. This group was also more likely to rely on PCPs (18.3%, n=25/137) and acute care providers (13.1%, n=18/137) for pain management.
Although only 4.0% of participants (n=36/890) reported their primary HS provider was a surgeon, over half (52.8%, n=19/36) received pain medication prescriptions from a surgeon, suggesting that participants primarily managed by surgeons are more likely to have pain management factored into their care than any other group (Fig. 2. b).
Pain Medication Prescription Trends in HS
The most commonly reported substances for managing HS pain were over-the-counter non-steroidal anti-inflammatory drugs (NSAIDs, 71.6%, n= 637/890), acetaminophen/paracetamol (62.3%, n=554/890), topical analgesics (46.3%, n=412), prescription NSAIDs (31.1%, n=277), and recreational marijuana (25.1%, n=223) (Fig. 3. a). Among the 890 participants, 26.6% (n = 237/890) reported using opioids for HS pain management and 6.1% (n=54/890) used an opioid prescription for someone else. Most participants who used opioids also used other non-opioid analgesics (97.05%), while participants who did not use other non-opioid analgesics were less likely to use opioids (8.64%, p<0.001).
Fig. 3. Patient-reported treatments for pain vary by HS severity.
a) The bar graph shows the number of participants (n) reporting a particular pain treatment for HS pain. b) The grouped bar graph shows the percentages of participants reporting the use of treatments for HS pain that exhibited statistically significant differences when stratified by pain severity. Pearson chi-squared test or Fisher exact test was used to determine statistical significance and corrected for multiple comparisons using the Benjamini-Hochberg (false discovery rate controlled at 0.05) as reported above. Data are presented in Supplementary Table 3.
Bar graphs depicting the a) number of participants reporting a particular pain treatment for HS pain, and b) the percentages of participants reporting the use of treatments for HS pain that exhibited statistically significant differences when stratified by pain severity.
Significant associations existed between primary HS provider type and specific treatments or prescriptions for HS pain (Supplementary Table 2). Participants whose HS was primarily managed by dermatologists were more likely to receive intralesional steroid injections (35.5%, n=156/440) compared to those primarily managed PCPs (9.9%, n=21/212), surgeons (16.7%, n=6/36), other providers (16.9%, n=11/65), or no provider (4.4%, n=6/137) (p=0.007). Participants whose HS was primarily managed by surgeons were more likely to receive prescription NSAIDs (47.2%, n=17/36, p=0.007), anti-epileptics (16.7%, n=6/36, p=0.011), opioids (52.8%, n=19/36, p=0.007), and tramadol (30.6%, n=11/36, p = 0.013) compared to all other provider types.
There were also significant associations between pain medication prescribers and specific treatments or prescriptions for HS pain (Supplementary Table 3). Participants receiving pain prescriptions from acute care providers were most likely to receive prescription NSAIDs (47.3%, n=44/93) compared to all other groups (p=0.002).
Lastly, there were significant associations between pain severity and specific treatments or prescriptions for HS pain. Severe pain was associated with increased use of antiepileptics (12.8%, n=36/282, p=0.021), tramadol (21.3%, n=60/282, p=0.042), and opioids prescribed for HS (21.3%, n=60/282, p=0.021) to manage pain (Fig. 3. b, Supplementary Table 4). Severe pain was initially associated acetaminophen/paracetamol (65.6%, n=185/282), prescription NSAIDs (33.7%, n=95/282), and alcohol (14.2%, n=40/282), but this association was no longer significant after adjusting for multiple comparisons (p=0.053, 0.102, and 0.102 respectively). Cannabis (over-the-counter and prescribed) and recreational marijuana use were not associated with pain severity.
Discussion
The novel findings presented in this study advance existing knowledge regarding the impact of pain in patients with HS. Nearly 80% of participants in this study reported moderate to severe pain (NRS ≥ 4) on average, highlighting how common HS pain was in our study population. This is greater than the figure in an earlier global survey study in which 61.4% of patients reported their HS pain as moderate to severe (NRS ≥ 5) [10]. The median reported pain score in this study was 5, which has been linked to limited ability to complete activities of daily living and sleep disruptions on the functional pain scale [33].
Moreover, this study reinforces the established association between HS pain and reduced QoL. Our analysis revealed that moderate and severe pain were independently associated with lower QoL, with Skindex Mini scores significantly higher in these groups than those with mild pain. We identified younger age, Asian race, difficulty accessing care, and severe global assessment scores as key contributors to pain severity in this global cohort. Even after adjusting for potential confounders, including sex, duration of symptoms, employment status, and insurance status, the difference in pain scores between Asian and White patients remained significant, suggesting that there may be underlying cultural, psychological, or systemic factors contributing to these disparities. Furthermore, the higher prevalence of uninsured status and shorter symptom duration among Asian patients may reflect broader issues related to access to healthcare and the management of chronic pain conditions in this global cohort.
Our original study reveals that individuals with very severe disease on the patient global assessment reported pain scores that were, on average, 4 points higher than those with none, minimal, or mild disease, even after adjusting for age, race, and access to dermatologic care. This substantial difference in pain perception underscores the disproportionate burden borne by patients with advanced HS and highlights the need for novel interventions to assess and address HS pain. These findings support prior literature emphasizing the significant burden of HS pain. Pain severity was independently associated with worse QoL. Notably, the results of this study highlight the effect of incremental increases in pain severity, with a 2-point increase on the pain NRS detrimentally impacting QoL by approximately 2 points on Skindex Mini, or to a degree comparable to advancing a full Hurley stage in disease severity. This is consistent, albeit to a lesser extent, with earlier research demonstrating that 1) a 2-point increase on the pain NRS can detrimentally affect QoL to a degree comparable to advancing from Hurley stage I to Hurley stage III disease severity [23] and 2) the minimal important difference of pain NRS in patients with HS is 1 [34]. Taken together, these results suggest that pain is a critical and modifiable driver of disease burden in HS and should be prioritized in both clinical management and future research to improve patient outcomes.
Despite the high prevalence of moderate and severe pain among participants, nearly 40% of participants in this original study had not been prescribed any medications for pain, underscoring a significant gap in HS care. Our study identifies the top barriers to accessing care for HS pain with granularity, highlighting barriers to adequate pain management driven by provider knowledge gaps, stigma, systemic barriers, and logistical and social factors. This study provides novel insights to complement prior research that reported only 35% of patients sought medical assistance for pain, and an equal percentage indicated that they had not used analgesics to manage their pain symptoms [19]. In addition, this study expands on existing knowledge by identifying specific demographic and healthcare factors contributing to pain, such as the impact of healthcare access, which is novel.
Our findings emphasize the urgent need for effective pain management strategies to reduce reliance on maladaptive coping mechanisms and improve overall QoL for patients with HS. Severe pain was associated with increased use of over-the-counter analgesics, prescription medications, and alcohol, suggesting that unmanaged pain may contribute to the development of a substance use disorder. This observation aligns with prior research, including a matched case-control study evaluating alcohol use disorder (AUD) in patients with inflammatory and pigmentary skin disorders [10, 35]. One study found that patients with HS had 1.91 times the odds of AUD compared to disease-free controls (p<0.001) [35]. Interestingly, only 31.3% of this effect was mediated by comorbid depression and anxiety [35]. suggesting that other factors, including pain severity and the chronic, debilitating nature of HS, may play a substantial role in the development of AUD.
In addition, our study sheds light on opioid use in people managing their HS pain. In this global cohort, 6.1% of participants reported using opioids prescribed to someone else to manage their HS pain. This proportion is double the percentage of people who misused prescription pain opioids in the last year (3.0%, or 8.6 million people) in the United States 2023 National Survey on Drug Use and Health (NSDUH) [36]. The most cited reason for prescription pain opioid misuse in the 2023 NSDUH report was to “relieve physical pain” (70.9 percent), suggesting that better management of physical pain, including HS pain, could decrease misuse.
Differences in pain medication prescriptions and management strategies for HS by provider type highlight the critical need for standardized, evidence-based guidelines both within and outside of the dermatology literature to address these disparities and ensure equitable, effective pain management for HS patients [37]. Intralesional triamcinolone injections have been shown to improve disease activity, quality of life, and pain [38, 39]; however, this in-office procedure is not as commonly implemented by PCPs, acute care providers, surgeons, and other providers as it is for dermatologists. It is important to improve familiarity with in-office, HS-specific treatments, particularly to address painful flares of HS. Conversely, participants managed by surgeons were more likely to receive systemic therapies, including prescription NSAIDs, antiepileptics, tramadol, and opioids, aligning with studies that highlight differences in healthcare provider prescribing habits in the diabetes literature [40]. Unsurprisingly, patients without a primary HS provider were least likely to manage pain with medications. Notably, while nearly one-third of participants reported opioid use, most (97.05%) also used non-opioid analgesics, consistent with literature advocating for multimodal pain management approaches in HS to reduce opioid reliance [21, 37].
A recommended therapeutic approach to HS pain management incorporates strategies for both acute and chronic pain. Acute nociceptive pain can be managed with acetaminophen, followed by oral NSAIDs, intralesional triamcinolone, and, if necessary, incision and drainage for acute abscesses. For refractory or severe acute pain, limited short courses of short-acting opioids may be prescribed [37].
Chronic HS pain management should address disease activity, pain severity and impacts, and psychosocial factors, including non-pharmacologic therapies like physical therapy, wound care, and behavioral health interventions. Pharmacologic choices may be tailored to pain subtype: nociceptive pain (aching from tissue damage) may respond to acetaminophen or, with duloxetine or nortriptyline as second-line options. Neuropathic pain (burning from somatosensory dysfunction) may be treated with gabapentin or duloxetine first, followed by pregabalin, venlafaxine, or nortriptyline. Anticonvulsants may be safely combined with serotonin-norepinephrine reuptake inhibitors (SNRIs), but SNRIs should not be used with other serotonergic drugs such as tramadol. Adjunct topical therapies and some complementary modalities (e.g., turmeric, alpha-lipoic acid, acupuncture, medical cannabis) may also be beneficial for acute and/or chronic HS pain. Referral to a pain specialist is recommended for refractory chronic pain before considering long-term opioids [37].
The large sample size, rigorous statistical analysis, and focus on patient-reported outcomes provide meaningful insights into the patient experience of pain in HS. Although this study surveyed a diverse global patient sample, it is limited by the use of a self-selected, anonymous sample with a disproportionately high proportion of female participants, introducing the potential for selection bias. Reliance on self-reported data instead of physician-rated disease severity assessment may result in inaccuracies or recall bias. Additionally, given the low number of Asian patients in our study, we caution against overinterpretation of statistically significant findings related to racial differences.
This study uniquely highlights gaps in the management of HS pain. Given the reported barriers related to inadequate provider knowledge and communication, improving provider awareness of HS-associated pain and its management both within and outside of dermatology is crucial. Integrating dermatology and primary care with pain management specialists could improve access to effective therapies and reduce the reliance on over-the-counter treatments. Ultimately, this study underscores the importance of patient-centered care approaches prioritizing pain management in HS treatment. Further studies are needed to understand how patients are managing HS pain.
Supplementary Material
Acknowledgement
We acknowledge UCSF Biostatistician Nancy Hills for her assistance with analysis.
Funding Sources
Dermatology Foundation Diversity Research Supplement Award, NIH NIAMS K23 AR074531, NIH NIAMS K23 AR080245, and NIH NCATS K12 TR004930. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health (NIH).
Footnotes
Study approval statement: This study protocol was reviewed and approved by the Institutional Review Board at the University of California, San Francisco, approval number 19-27407.
Consent to participate statement: Written (electronic) informed consent was obtained from participants prior to participation in the study. Participants provided informed consent in the first screen of the electronic survey form.
Conflict of Interest Statement
FABR has no conflicts to disclose. LAB received honoraria from VisualDx and serves as Rx workgroup chair for the HS Foundation RxR Committee (unpaid). LAVO received consulting fees from Union Chemique Belge (UCB), Novartis, Chemocentryx, and DynaMed; received grants from Pfizer; serves on the Board of Directors for the HS Foundation; and LAVO was a member of the journal’s Editorial Board at the time of submission. HBN has received consulting fees from Abbvie, Medscape, Sonoma Biotherapeutics, Union Chimique Belge (UCB) and Novartis; and holds shares in Radera, Inc. She is also an Associate Editor for JAMA Dermatology and Vice President of the Hidradenitis Suppurativa Foundation.
Data Availability Statement
The data underlying this article cannot be shared publicly due to the privacy of individuals who participated in the study and in accordance with IRB protocol. Further inquiries can be directed to the corresponding author.
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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
The data underlying this article cannot be shared publicly due to the privacy of individuals who participated in the study and in accordance with IRB protocol. Further inquiries can be directed to the corresponding author.