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.
Gomez et al. (Fri,) studied this question.