Pain management modalities for hidradenitis suppurativa: a patient survey

Abstract

Background

Pain is one of the most common and debilitating symptoms of hidradenitis suppurativa (HS).

Objective

We sought to identify pain management therapies used in HS and assess patient-perceived effectiveness.

Methods

An anonymous online survey was posted to Facebook HS support groups. Participants selected all that applied from a list of 20 therapies to indicate which ones they have tried for HS pain. For each therapy used, participants were asked to rate effectiveness on a 5-point scale: not successful (1), mildly successful (2), moderately successful (3), very successful (4), and extremely successful (5). Mean effectiveness ratings were calculated by averaging the corresponding numbers.

Results

Of the 438 participants, 93.8% were female. Participants classified themselves as Hurley stage I (8.2%), II (53.4%), and III (38.4%). Warm compresses were the most commonly used therapy (82.4%), followed by ibuprofen/naproxen (74.7%), Epsom salt baths (57.8%), cold compresses (45.4%), and acetaminophen (44.7%). Marijuana smoking received the highest mean effectiveness rating (2.92 ± 1.10), followed by marijuana edibles (2.87 ± 1.10), and opioids (2.83 ± 0.98). Mean effectiveness ratings were lowest for bleach baths (1.52 ± 0.80), sitz baths (1.53 ± 0.56), massage (1.61 ± 0.92), gabapentin (1.64 ± 0.73), and acetaminophen (1.71 ± 0.75).

Conclusions and relevance

Even the highest-rated pain management modalities are considered only moderately effective by HS patients.

Keywords:

• Hidradenitis suppurativa
• pain
• pain management

Acknowledgments

We would like to thank the members of the following HS support groups on Facebook for their participation: Hidradenitis Suppurativa Support Group; Hidradenitis Suppurativa Warriors; HS Support Group—Hidradenitis Suppurativa (Pics allowed); Hidradenitis Suppurativa, hs; #HSGLOBAL—Hidradenitis Suppurativa (HS) International; Hidradenitis Suppurativa Trust—Patient Support Group; Hope for HS—Private Group; Hidradenitis Suppurativa Warriors for Research; HS Connect.

Author contributions

Concept and design: Fernandez, Hsiao, Shi

Acquisition, analysis, or interpretation of data: all authors

Drafting of the manuscript: all authors

Critical revision of the manuscript for important intellectual content: all authors

Statistical analysis: Fernandez, Borgstrom

Supervision: Shi

Disclosure statement

Vivian Y. Shi is a stock shareholder of Learn Health and has served as an advisory board member, investigator, and/or received research funding from Sanofi Genzyme, Regeneron, AbbVie, Eli Lilly, Novartis, SUN Pharma, LEO Pharma, Pfizer, Menlo Therapeutics, Burt’s Bees, GpSkin, Altus Labs and Skin Actives Scientific. There were no incentives or transactions, financial or otherwise, relevant to this manuscript.

Lauren A.V. Orenstein has severed as an investigator for Chemocentryx. There were no incentives or transactions, financial or otherwise, relevant to this manuscript.

Jennifer M. Fernandez, Alyssa M. Thompson, Mark Borgstrom, and Jennifer L. Hsiao have no conflicts of interest to report.

Data availability statement

Dr. Vivian Y. Shi had full access to all the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.