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. 2021 Feb 24;157(4):464–466. doi: 10.1001/jamadermatol.2020.5857

Expert Knowledge, Attitudes, and Practices in Management of Hidradenitis Suppurativa Pain

Mark J Jedrzejczak 1, John R Ingram 2, Michelle A Lowes 3, Haley B Naik 4,5, Anne Marie McKenzie-Brown 1, Suephy C Chen 6, Lauren A V Orenstein 6,
PMCID: PMC7905694  PMID: 33625467

Abstract

This cross-sectional survey characterizes the knowledge, attitudes, and practices of international experts in the management of pain in patients with hidradenitis suppurativa.


Hidradenitis suppurativa (HS) is a chronic inflammatory skin disease that may cause recurrent scarring abscesses and tunnels and may lead to worse quality of life and greater pain than most dermatologic diseases.1 Patients rate HS pain as the most important symptom,2 yet its mechanism is unknown. Approved biologics only modestly decrease HS pain, and most patients live with moderate or worse pain.3 Although international guidelines recommend measuring HS pain,4 therapeutic recommendations are sparse.5 Because expert approaches to HS pain remain poorly described, this study aimed to characterize specialists’ knowledge, attitudes, and practices.

Methods

A survey was developed through structured interviews with experts in HS, pain management, and survey methods (eAppendix in the Supplement).6 This anonymous electronic survey was distributed by 4 HS expert listservs (see Additional Contributions) from July to August 2020. Eligible respondents were board-certified dermatologists with 1 or more HS visit in the past 6 months. The institutional review board at Emory University in Atlanta, Georgia, approved this study and waived the requirement for obtaining informed patient consent under exception 45 CFR 46.104(d)(2) for educational tests, surveys, interviews, or observation or public behavior. No one received compensation or was offered any incentive for participating in this study.

Stratified analyses by respondent continent were performed to compare pain measurement practices and psychological treatments. Two-sided χ2 and Fisher exact tests were conducted, with α ≤ .05 considered statistically significant.

Results

Of 253 HS listserv members surveyed, 58 responses were received (response rate, 22.9%). Eight respondents were excluded for clinical inactivity (n = 1) or lack of board certification (n = 7). Fifty eligible responses were received from 15 countries and 4 continents. In total, 47 self-identified as HS experts, 32 had HS specialty clinics, and 23 were current or former HS foundation board members.

Table 1 provides HS pain attitudes and practices. All 20 respondents from Australia or Europe reported measuring HS pain in the clinic, whereas only 16 of 25 in North America and 2 of 5 in Asia did so (P = .004). Table 2 provides medications recommended for the treatment of HS pain.

Table 1. Attitudes and Practices of 50 Physicians.

Measure No. (%) of respondents
Attitude
Pain impacts quality of life in HS
Strongly agree 45 (90)
Agree 5 (10)
Neutral 0
Disagree 0
Strongly disagree 0
HS pain needs treatment beyond disease-directed therapy
Strongly agree 22 (44)
Agree 21 (42)
Neutral 5 (10)
Disagree 2 (4)
Strongly disagree 0
Current HS pain guidelines are sufficient
Strongly agree 3 (6)
Agree 6 (12)
Neutral 12 (24)
Disagree 22 (44)
Strongly disagree 7 (14)
Dermatologists should ask patients with HS about pain
Strongly agree 37 (74)
Agree 12 (24)
Neutral 1 (2)
Disagree 0
Strongly disagree 0
Specialties considered important in managing HS pain
Pain specialist 44 (88)
Dermatologist 38 (76)
Primary care physician 27 (54)
Psychologist 22 (44)
Psychiatrist 19 (38)
Patients with chronic HS pain benefit from consulting nondermatologists
Strongly agree 19 (38)
Agree 20 (40)
Neutral 8 (16)
Disagree 2 (4)
Strongly disagree 1 (2)
Practice
Pain assessment tool used in routine clinical practice
Numeric rating scale 29 (58)
Visual analog scale 17 (34)
FACES Pain Rating Scale 1 (2)
McGill Pain Questionnaire 1 (2)
Brief Pain Inventory 0
None 12 (24)
Most common nonpharmacologic pain management recommendations
Tobacco cessation 42 (84)
Wound care 41 (82)
Incision and drainage 39 (78)
Weight loss 38 (76)
Wardrobe 37 (74)
Most frequently physician-cited barriers to managing HS pain
Lack of knowledge or experience in prescribing pain medications 31 (62)
Concern about habit-forming potential of medications 31 (62)
Concerns about medication adverse effects 29 (58)
Lack of knowledge about nonpharmacologic pain management 23 (46)
HS guidelines do not provide adequate guidance 17 (34)

Abbreviation: HS, hidradenitis suppurativa.

Table 2. Respondent Comfort With Prescribing Pharmacologic Analgesia for Acute or Chronic Hidradenitis Suppurativa Pain.

Medication No. (%) of prescribing respondents (N = 50)
Acute pain Chronic pain
Acetaminophen 42 (84) 43 (86)
OTC NSAID 41 (82) 37 (74)
Gabapentin 6 (12) 37 (74)
Prescription NSAID 33 (66) 34 (68)
Pregabalin 6 (12) 31 (62)
Tricyclic antidepressant 6 (12) 25 (50)
Topical analgesic 26 (52) 24 (48)
SNRI 3 (6) 20 (40)
Intralesional triamcinolone 42 (84) 14 (28)
Opioid (short course) 18 (36) 8 (16)
Naltrexone (low dose) 2 (4) 7 (14)
Cannabinoid 5 (10) 6 (12)
Curcumin 2 (4) 6 (12)
Opioid (chronic course) 2 (4) 2 (4)
α-Lipoic acid 2 (4) 2 (4)

Abbreviations: NSAID, nonsteroidal anti-inflammatory drug; OTC, over the counter; SNRI, serotonin-norepinephrine reuptake inhibitor.

On knowledge assessment, 31 of 50 dermatologists correctly answered that cognitive behavioral therapy and antidepressants are effective for treating chronic pain. Only 26 of 50 believed that psychiatrists or psychologists are important in HS pain management, and psychology or psychiatry referrals were low (27 of 50).

Discussion

This cross-sectional survey characterizes variation among international experts’ knowledge, attitudes, and practices regarding HS pain management. There was strong agreement that HS pain is associated with worse quality of life and that current management guidelines are insufficient. Although most experts agreed that dermatologists have an important role to play in managing HS pain, many cited lack of knowledge as a barrier and felt that patients with HS and chronic pain benefit from seeing other specialists.

Clinicians in North America and Asia were less likely to measure HS pain. The reason is unknown but may reflect regional differences in training or in collecting patient-reported outcomes. This study highlights the low level of knowledge and use of psychological treatments for chronic HS pain. Mental health and HS pain severity are strongly associated.1 Wider incorporation of psychological therapies may represent an important opportunity for reducing chronic HS pain.

Limitations

The survey is limited by its response rate, its inability to characterize nonresponders, and its inability to determine overlap among listserv memberships. Although intralesional triamcinolone is also a therapy for HS, it was included in this survey because of its role in reducing acute inflammation and reducing pain during flare-ups.

Conclusions

In conclusion, most patients with HS consider pain to be their most important symptom, but research to elucidate HS pain mechanisms and treatment strategies remains a critical unmet need. Because dermatologists understand the disease process and its association with the quality of life, they play a crucial role in coordinating HS pain management, either independently or with a multidisciplinary team. Even among HS specialists, knowledge gaps presented a common barrier to managing HS pain. Educating general dermatologists and specialists about pain management may empower them to better address skin pain and its association with the quality of life.

Supplement.

eAppendix. Physician Characteristics

References

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Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Supplementary Materials

Supplement.

eAppendix. Physician Characteristics


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