Abstract
This survey study examines the use and perceptions of complementary and alternative medicine by individuals with hidradenitis suppurativa who completed an anonymous survey.
Hidradenitis suppurativa (HS) is a debilitating disease characterized by recurrent painful nodules, abscesses, and sinus tracts in intertriginous areas. Available treatments have variable and limited efficacy.1,2 Complementary and alternative medicine (CAM) is widely used in other chronic dermatoses; however, there is a dearth of investigations into CAM in HS. The goal of this study is to explore patterns of conventional and CAM therapies used by patients with HS.
Methods
An anonymous, multiple-choice, 25-item questionnaire with free-text answer options was distributed in HS specialty clinics (University of Arizona–Tucson, University of California–Los Angeles, and York Dermatology Clinic and Research Center in Richmond Hill, Ontario, Canada) and through international social media support groups (Hope For HS, International Association of HS Network, and HS Warriors). The study was granted exemption from the University of Arizona institutional review board. Informed consent was unnecessary due to the use of anonymous data.
Data were collected between June 2019 and August 2019. Excel version 16.31 (Microsoft) and SAS version 9.4 (SAS Institute) were used for data analysis. A χ2 test of variance was used to determine significant differences between groups, with a threshold P value of .05.
Results
A total of 303 respondents participated (mean [SD] age, 38.0 [10.9] years; 268 female participants [88.4%], 34 male participants [11.2%], and 1 nonbinary participant [0.3%]). Additional demographic data are summarized in the Table. Nearly all respondents (296 [97.7%]) reported using conventional therapies (Figure, A). Surgical excisions (73 of 126 respondents [57.9%]), prescription pain medications (79 of 148 respondents [53.4%]), and intralesional steroids (71 of 133 respondents [53.4%]) were perceived to be most helpful. Half of respondents using biologics (56 of 112 respondents [50.0%]) perceived them as helpful, and less than one-third of respondents perceived oral (75 of 267 respondents [28.1%]) and topical (76 of 235 respondents [32.3%]) antibiotics as helpful. Nearly half of respondents (147 of 296 [49.7%]) perceived conventional therapy as not very successful (Figure, B).
Table. Patient Demographic Information.
| Patient Characteristic | No. (%) |
|---|---|
| Age, y | |
| Mean (SD) | 38.0 (10.9) |
| Median (range) | 37.0 (17-78) |
| 17-24 | 31 (10.2) |
| 25-34 | 88 (29.0) |
| 35-44 | 104 (34.3) |
| 45-54 | 57 (18.8) |
| 55-64 | 19 (6.3) |
| ≥64 | 4 (1.3) |
| Sex | |
| Male | 34 (11.2) |
| Female | 268 (88.4) |
| Other | 1 (0.3) |
| Race/ethnicity | |
| White | 236 (73.5) |
| Black/African American | 36 (11.2) |
| Hispanic | 24 (7.5) |
| Native American | 8 (2.5) |
| South Asian | 7 (2.2) |
| Other | 4 (1.2) |
| East Asian | 3 (0.9) |
| Middle Eastern | 3 (0.9) |
| Pacific Islander | 0 |
| Highest education level | |
| <High school | 12 (4.0) |
| High school graduate | 62 (20.5) |
| Occupational skills training | 33 (10.9) |
| College | 147 (48.5) |
| Graduate school | 49 (16.2) |
| Country of residence | |
| United States | 220 (72.6) |
| Canada | 43 (14.2) |
| United Kingdom | 10 (3.3) |
| Sweden | 8 (2.6) |
| Ireland | 6 (2.0) |
| Australia | 5 (1.7) |
| New Zealand | 2 (0.7) |
| Albania | 1 (0.3) |
| Denmark | 1 (0.3) |
| Germany | 1 (0.3) |
| Greece | 1 (0.3) |
| India | 1 (0.3) |
| Lebanon | 1 (0.3) |
| Malaysia | 1 (0.3) |
| The Netherlands | 1 (0.3) |
| South Africa | 1 (0.3) |
| Location type | |
| Metropolitan | 192 (63.6) |
| Rural | 110 (36.4) |
| Height, cm | |
| Mean (SD) | 166.6 (7.6) |
| Median (range) | 167.6 (142.2-195.6) |
| Weight, kg | |
| Mean (SD) | 96.1 (26.8) |
| Median (range) | 93.4 (43.5-302.1) |
| BMI | |
| Mean (SD) | 34.5 (9.9) |
| Median (range) | 33.5 (18.6-33.5) |
| Normal (18.5-24.9) | 29 (11.0) |
| Overweight (25.0-29.9) | 55 (20.8) |
| Obesity (≥30) | 180 (68.2) |
| Hurley stage | |
| 1 | 26 (8.58) |
| 2 | 145 (47.85) |
| 3 | 132 (43.56) |
| Hidradenitis suppurativa duration, y | |
| <1 | 8 (2.64) |
| 1-5 | 30 (9.90) |
| 6-10 | 57 (18.81) |
| 11-19 | 78 (25.74) |
| 20-29 | 78 (25.74) |
| 30-39 | 39 (12.87) |
| 40-49 | 11 (3.63) |
| >50 | 2 (0.66) |
| How were you first introduced to the use of alternative medicine? | |
| Internet or personal research | 76 (25.1) |
| Social media | 46 (15.2) |
| Friend or coworker | 40 (13.2) |
| Family member | 39 (12.9) |
| Other | 13 (4.3) |
| Other media (radio, television, advertisement) | 4 (1.3) |
| Do any of your family members use alternative medicine?, No./total No. (%) | |
| No | 146/303 (48.2) |
| Respondents using CAM | 119/146 (81.5) |
| Yes | 77/303 (25.4) |
| Respondents using CAM | 72/77 (93.5) |
| Unsure/do not know | 80/303 (26.4) |
| Respondents using CAM | 66/80 (82.5) |
Abbreviations: BMI, body mass index (calculated as weight in kilograms divided by height in meters squared); CAM, complementary and alternative medicine.
Figure. Survey Results.
A, Respondent-perceived effects of conventional therapies on hidradenitis suppurativa (HS); B, Overall respondent-perceived success of conventional medicine compared with complementary and alternative medicine (CAM); C, Reasons for using CAM; D, Respondent-perceived effects of CAM. CBD indicates cannabidiol.
While 255 respondents (84.2%) reported using CAM, only 177 of these (69.4%) disclosed their CAM use to a health care professional (HCP). There were no significant differences in CAM use based on demographics or disease characteristics. The most common reasons for CAM use were “frustration with conventional treatment” (163 respondents [63.9%]) and desire to try “new” (130 respondents [51.0%]) or “more ‘natural’” (113 respondents [44.3%]) treatments (Figure, C).
The most commonly used CAM products were turmeric/curcumin (152 of 255 respondents [59.6%]), magnesium sulfate salt bath (151 of 255 [59.2%]), and zinc (140 of 255 [54.9%]) (Figure, D). The respondents perceived marijuana (59 of 103 respondents [57.3%]), magnesium sulfate bath (72 of 151 [47.7%]), and topical cannabidiol (CBD) oil (30 of 67 [44.8%]) as most helpful. The most common lifestyle practices for HS were dietary changes (230 of 255 respondents [90.2%]), tobacco cessation (86 of 255 [33.7%]), and yoga or Pilates (58 of 255 [22.7%]) (Figure, D). Of 230 respondents, 106 (46.1%) reported that dietary changes were beneficial for HS. Most respondents who used CAM (166 of 255 [65.1%]) perceived having at least mild success with CAM (Figure, B). Most respondents (183 of 255 respondents [71.8%]) would recommend CAM to others.
Discussion
The use of CAM among this cohort of patients with HS (84.2%) is more common than in patients with psoriasis (46.7%) and atopic dermatitis (50.4%).3,4 Despite pervasive use of conventional treatments (296 [97.7%]), only half of these respondents perceived conventional medicine at least mildly successful, compared with two-thirds of those who used CAM. These differences were consistent with the reported frustration with conventional medicine among respondents who used CAM. Dietary changes were the CAM modality most commonly implemented (230 respondents [90.2%]) and were deemed helpful in nearly half of implementers. Marijuana, topical CBD, and oral CBD oil were also relatively successful. Other commonly used CAM methods included turmeric and magnesium sulfate baths.
To our knowledge, this study is the largest and most comprehensive survey to date that explores CAM use in patients with HS. Previously, a 9-question CAM HS survey was distributed to patients in a clinic in Ireland.5 Only 20% of their 107 participants reported CAM use, compared with the 84.2% reported by the more diverse respondents in this study.
Only 69.4% reported having informed an HCP about CAM use. Previous investigations have shown that patients are less likely to report CAM use when not asked or do not believe HCPs need to know about CAM use.6 For clinicians, inquiring about CAM use can promote shared decision-making and establishing trust and transparency in HS management.
This study is limited by self-reported HS disease severity. The proportion of respondents who completed the questionnaire from online vs in clinic is unknown. Additionally, patients’ perceived views of treatment success may differ from clinical determinants of success.
Conclusions
Respondents with HS reported inadequate response to conventional therapy, which may lead to frustration and lower treatment adherence. The efficacy and safety of CAM modalities, as well as the role of CAM as adjunctive therapy in HS treatment, warrant further investigation.
References
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