The impact of hidradenitis suppurativa on social activities: an observational study

Hidradenitis suppurativa (HS) can seriously affect the quality of life of patients. However, its specific impact on participation in daily social activities is not well characterized. We recruited a cohort of patients with HS to complete a survey assessing the degree of interference of HS on participation in social activities. Patients also completed the Brief Fear of Negative Evaluation (BFNE) to assess levels of social anxiety. The majority of patients in our cohort, regardless of Hurley stage, reported interference with social activities, and patients with more painful nodules and greater body region involvement reported greater interference with social activities. BFNE scores were elevated in our cohort, and patients with higher BFNE scores reported greater interference in all assessed social activities. The physical and psychological effects of HS can interfere with patients’ participation in social activities, and efforts to address both aspects can improve quality of life.

Introduction

Hidradenitis suppurativa (HS) is a debilitating, inflammatory apocrine-bearing skin condition characterized by nodules, abscesses, fistulas, and sinus tract formation. [1]. Multiple aspects of patients’ lives are negatively affected and patients frequently report feeling isolated [2,3]. There is little information on how HS may impact patients’ participation in daily social activities. We assessed the impact of HS on patients’ ability to participate in social activities and examined whether a greater propensity to experience social anxiety was associated with a greater impact on social activities.

Materials & Methods

We approached 153 patients (n=123 couriers, 30 clinics) diagnosed with HS (ICD-10 code: L 73.2) between June and September 2018 from Atrium Health Wake Forest Baptist Department of Dermatology clinics after approval of the Institutional Review Board. A total of 67 questionnaires were received (mail, n=40; ​​clinical, n=27) and analyzed. Severity of illness was assessed using a validated self-report tool using the Hurley Staging System [4]. Respondents reported the number of painful nodules and the number of body regions involved. A series of questions were asked about the extent to which HS interfered (a lot, a little, none) with social activities. We assessed whether aspects of objective disease severity (Hurley score, number of body regions affected, and number of painful nodules) correlated with interference with social activities. Respondents also completed the Brief Fear of Negative Evaluation (BFNE), a validated questionnaire that assesses the tendency to experience social anxiety [5]. The BFNE consists of 12 questions, each rated on a Likert scale of 1 to 5 (1 = not at all like me, 2 = somewhat like me, 3 = moderately like me, 4 = very like me, 5 = extremely like me), with a range of 12 to 60; higher scores indicate a greater tendency to experience social anxiety [5]. Respondents’ scores were grouped into high BFNE (≥ 31) and low BFNE (≤ 30) based on the median threshold. We assessed whether higher BFNE scores were associated with greater interference with social activities. Data were analyzed using SAS 9.4 software. Differences in percentage of respondents were analyzed using chi-square and Fisher’s exact analysis.

Results

Respondent demographics (average age: 39, 90% female, 57% African American) [AA]) were comparable to non-responders (mean age: 36 years, 80% female, 38% AA). Respondents had an average BMI of 35.7, 56% had a family history of HS, 28% were current smokers, 22% had Hurley stage 1, 35% had Hurley stage 2, and 43% had severity of Hurley stage 3 disease; mean disease duration was 13.8 years. Most respondents said that HS interfered with participation in sports or recreational activities (69.4%), going out socially or to a special event (66.1%), hobbies (60.0%), going out (54.0%), going out in public (52.3%). %), and being with family members (41.3%; table 1). More respondents with more than one body region affected with HS said that their disease had a significant impact on participation in sports or recreational activities, on social outings or special events, on participation in passes -time and on evenings, compared to respondents with involvement of a region of the body (50.8%, 32.3%, 32.3%, 33.3% versus 0%; p=0.008, 0.002, 0.02, 0.04, respectively; Table 1). Additionally, more patients with > 5 tender nodules reported that their HS had a significant impact on participation in sports or recreational activities and on social outings or a special event, compared to patients with ≤ 5 tender nodules ( 59.3%, 37.9% versus 36.1%, 24.3%; p=0.04, 0.006, respectively; Table 1). The mean BFNE was 31.5 (median 31). Higher BFNE/greater tendency to experience social anxiety was associated with greater activity interference for all activities assessed (Table 1).

social activity Degree of interference Severity of disease according to Hurley score Number of body regions with HS Number of painful nodules High BFNE (≥31) Low BFNE (≤30)
1 2 3 All 3 1 >1 ≤5 >5 Mean BFNE = 38.6 Mean BFNE=24.2
n=17 n=21 n=27 n=65 n=6 n=60 n=37 n=28 n=32 n=31
Participating in sports or recreational activities Plot 37.5% 47.6% 52.0% 46.8% 0%** 50.8%** 36.1%* 59.3%* 62.5%** 29.0%**
Little 31.3% 14.3% 24.0% 22.6% 16.6** 22.0%** 19.4%* 25.9%* 18.8% 25.8%
Going out socially or to a special event Plot 27.8% 23.8% 34.6% 29.2% 0% ** 32.3%** 24.3%** 37.9%** 43.8%* 16.1%*
Little 22.2% 33.3% 50.0% 36.9% 0%** 38.7%** 24.3%** 48.3%** 31.2% 45.2%
make hobbies Plot 16.6% 28.6% 42.3% 30.8% 0%* 32.3%* 29.7% 31.0% 43.8%* 16.1%*
Little 33.3% 33.3% 23.1% 29.2% 0%* 30.6%* 16.2% 37.9% 28.1% 47.6%
To party Plot 17.6% 28.6% 40.0% 30.2% 0%* 33.3%* 27.0% 37.0% 50.0%** 12.9%**
Little 29.4% 33.3% 28.0% 23.8% 0%* 25.0%* 18.9% 32.6% 12.5%* 35.5%*
go out in public Plot 17.6% 19.0% 25.9% 21.5% 0% 24.2% 18.9% 27.6% 40.6%** 6.5%**
Little 23.5% 28.6% 37.0% 30.8% 16.6% 32.3% 27.0% 37.9% 21.9% 41.9%
Being with family members Plot 5.9%, 9.5% 24.0% 14.3% 0% 16.6% 10.8% 22.2% 25.0%* 6.5%*
Little 23.5% 33.3% 24.0% 27.0% 0% 28.3% 21.6% 33.3% 34.4% 19.4%

Discussion

The majority of patients in our cohort, regardless of Hurley stage, reported that HS interfered with their social activities, however, patients with more painful nodules and affected body regions reported greater impact on their social activities. Additionally, subjects with a greater tendency toward social anxiety, as measured by BFNE, had greater interference in all social activities.

Participation in physical and social activities may improve disease severity and patient well-being, respectively, and their absence may worsen disease outcomes and contribute to feelings of isolation [6,7]. Social anxiety may be a contributing factor to the degree of isolation of HS patients. Currently, there are few data on the effect of HS on participation in social activities. Improved quality of life is needed for patients with this physically and psychologically debilitating disease [8]. Interventions, such as social support groups, can help improve the quality of life of patients with HS, who are already prone to isolation, especially in patients with greater body region involvement. and in patients with a tendency to social anxiety [9]. Patients with a greater tendency to experience social anxiety may have the greatest need for such support.

Limitations of our study include a small sample size recruited from a single academic center, although our effect size was large enough to detect differences. Our non-response rate was high; however, the demographic characteristics of responders and nonresponders were similar. We did not assess why HS interfered with various social activities, and although we did not assess causality, interventions to reduce isolation in patients with HS may be useful for improve their quality of life.

conclusion

HS is a debilitating disease and patients have reported feelings of isolation in previous studies. In our cohort, subjects reported that their HS interfered with daily social activities. These included participating in sports, going out socially or to a special event, participating in hobbies, going to parties, going out in public, or being with family. Additionally, subjects with a higher tendency to feel social anxiety reported greater interference in social activities, compared to subjects with a lower tendency to feel social anxiety. The physical and psychological effects of HS impair quality of life. Holistic management of patients with HS can help reduce disease burden.

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