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Kirby JS, Sisic M, Tan J. Exploring Coping Strategies for Patients With Hidradenitis Suppurativa. JAMA Dermatol. 2016;152(10):1166–1167. doi:10.1001/jamadermatol.2016.1942
Copyright 2016 American Medical Association. All Rights Reserved. Applicable FARS/DFARS Restrictions Apply to Government Use.
Hidradenitis suppurativa (HS) is a chronic inflammatory skin disease that causes intensely sore nodules and abscesses that result in scars and dyspigmentation. Patients with HS can experience severe pain and discharge that may be malodorous.1 Hidradenitis suppurativa may lead to negative impacts on work and income, interpersonal relationships, self-worth, psychological health, as well as sexual dysfunction and distress.2,3 However, studies on the impact of HS on patients’ quality of life (QOL) do not comprehensively address patients’ coping and resilience strategies. For example, Esmann and Jemec2 conducted a study on the psychosocial effects of HS, the findings of which were in line with other published studies demonstrating the negative impacts of HS. However, they briefly mentioned instances of positive impacts of social support (eg, a woman being supported by a romantic partner to wear a sleeveless top and consequently feeling a sense of triumph).2 Whereas, to our knowledge, research on HS and positive coping is nonexistent, long-standing research4 on other skin disorders, such as psoriasis, shows that patients use multiple coping strategies. The objective of this study was to explore the coping strategies of individuals with HS.
Patients evaluated in the Department of Dermatology with a recorded diagnosis of HS were recruited in June 2015. Patients were excluded if they were not fluent in English, did not have HS, or had HS for less than 6 months. After giving verbal consent and confirming English fluency, semistructured interviews were performed in person by 1 interviewer (JSK) using an interview guide. Some examples of the questions asked in these interviews are:
• What bothers you the most about your HS? How do you handle that?
• Please tell me the major ways in which HS affects your life.
• What happens to your mood when you have HS? How do you handle that?
• How does your HS get in the way of relationships with other people?
Interviews were performed in July and August 2015 and were tape-recorded and transcribed verbatim. Transcripts were reviewed line-by-line and analyzed using thematic analysis. This study was approved by the institutional review board of the Penn State College of Medicine. Patients received a $50 stipend for their participation.
Twenty-one patients participated: 16 (76.2%) participants were women and 5 (23.8%) were men; mean (SD) age was 46.8 (13) years (range, 23-74 years); with varied ethnicities (13 [61.9%] non-Hispanic white, 3 [14.3%] Hispanic, 2 [9.5%] black, 1 [4.8%] Asian, and 2 [9.5%] with mixed ethnicity ); mean (SD) disease duration was 20.5 (12.7) years; Hurley stage 2 (12 [57.1%]) and stage 3 (9 [42.9%]) disease. Nearly all the participants (n = 18, 85.7%) commented on their own coping strategies, including physical and social coping. Half of the participants (n = 10, 47.6%) reported on the role of social support from friends, family, strangers, etc. The Box provides examples of some direct quotes about coping strategies used by participants that demonstrate the data supporting these findings.
“I've had to do a lot of soul searching and pep talks and say well in spite of these scars (…) you still look good. You still can think highly of yourself and still be sexy. You just have to wear different underwear certain days of the week but that's ok.”
Use of humor
“[talking about sexual intercourse] And sometimes we just laugh because he has fibromyalgia and I have this. And sometimes we add a little humor because we have to.”
“I haven't had a really bad one since last summer since I've been on this lotion. So I mean it really has helped.”
“And like I smelled half the time from the boils itself I smell it. I smell the infection. And it's like sometimes it turns my stomach. That's why I don't raise my hand.”
“I pretty much stopped dating because I just didn't know how to deal with it.”
Support of others
Friends, family, or others
[about youngest son] “So his way of helping me get through the days is we've had an ongoing game of war for the last 6 years and when I don't feel good we'll get the cards out. And we'll sit there and play best 3 out of 5. And then he sits there with me. Because he knows I can't get up and do stuff with him.”
“I told my friend… and he was so cool about it. He's like ‘hey that's ok. That's something that you took your time to tell us, that’s fine.’ (…) And I got 2 different positive reactions.”
“It has helped [sharing their condition with someone else], and I'll tell you for sure, that it has helped that my girlfriend is educated too. It would be harder to explain something like this to a person who doesn't want to read about it and understand it.”
In this study, patients with HS used several coping and social support strategies. Studies of patients with psoriasis show patients’ QOL is related to coping style. For example, those with an emotive coping style (eg, daydreaming about a different life) had lower QOL. In contrast, those with higher perceived social support or a normalizing style of coping, which includes informing others about their condition, had a higher QOL.5 For nondermatologic conditions, changes in coping style are correlated with improved QOL and functional outcomes for patients with musculoskeletal injuries.6 This is an exploratory qualitative study of limited size, but it may have an effect on practice in 2 ways. First, this research expands on earlier studies to demonstrate the presence of multiple coping styles and social support strategies for patients with HS. Second, this research highlights patients’ physical and social coping skills as well as the importance of having social support from others (friends, family, and others). Future research could study the coping strategies used by patients with HS, the impact of teaching those coping strategies to patients with less positive styles, and the subsequent impact on QOL and HS severity.
Corresponding Author: Joslyn S. Kirby, MD, MS, MEd, Department of Dermatology, Penn State Milton S Hershey Medical Center, Hershey, PA 17033 (Jkirby1@hmc.psu.edu).
Accepted for Publication: May 3, 2016.
Published Online: June 15, 2016. doi:10.1001/jamadermatol.2016.1942
Author Contributions: Ms Sisic and Dr Kirby had full access to all of the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis.
Study concept and design: Kirby, Sisic.
Acquisition, analysis, or interpretation of data: Sisic, Tan.
Drafting of the manuscript: Kirby, Sisic.
Critical revision of the manuscript for important intellectual content: Tan.
Statistical analysis: Sisic.
Obtained funding: Sisic.
Administrative, technical, or material support: Kirby.
Study supervision: Kirby.
Conflict of Interest Disclosures: None reported.
Funding/Support: This study was supported in part by Windsor Clinical Research Inc, and MITACS Accelerate were used to fund the analysis of data.
Role of the Funder/Sponsor: Windsor Clinical Research Inc, and MITACS Accelerate had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.
Additional Contributions: The authors would like to thank Lisa Plant, MA, Department of Psychology, University of Windsor, and Sanwarjit S. Boyal, BMSc, Windsor Clinical Research Inc for their paid research contributions to this work. Data in this manuscript have been used as part of a larger study on measuring quality of life with hidradenitis suppurativa.