Hidradenitis Suppurativa Foundation

Psychosocial Impact of Hidradenitis Suppurativa: A Qualitative Study

Hidradenitis suppurativa influences patients’ lives in many ways. It is therefore necessary to focus on the effects of the disease on daily life in order better to define patient-related outcomes in hidradenitis suppurativa studies. Interviews were conducted with 12 patients with hidradenitis suppurativa. Initial single interviews were followed by semi-structured and structured qualitative focus group interviews in order to improve the richness of the data and obtain in-depth understanding of the impact of the topics. Important topics were found to relate to aspects of interpersonal contact, especially in relation to smell and appearance, various emotional reactions, and feelings of lack of control. It was found that hidradenitis suppurativa has a great emotional impact on patients and promotes isolation due to fear of stigmatization. Shame and irritation are frequent and relate to smell, scars, itching and pain. Quality of life is adversely affected and professional support is needed. Key words: interview; quality of life; hidradenitis; smell; emotion; stigmatization.

Hidradenitis suppurativa (HS) is a chronic, recurrent, debilitating inflammation of the hair follicles, typically in the groin and armpits. It is scarring, creates sinus tracts and often produces a malodorous and recurrent discharge. The disease is often painful and the lesions can be itchy. HS is generally not a well-known disease and many non-dermatologist clinicians are unfamiliar with it.

It is estimated that HS affects 0.33–4% of the population in Europe (1, 2). Onset usually occurs immediately after puberty, but it may develop at any time during adolescence (3). It affects women more often than men (1). The aetiology of HS is unknown, but the pathogenesis involves inflammation of the hair follicles.

It is easy to imagine the psychosocial impact of the disease, and yet this has been the topic of only a few studies (4–8). To obtain an increased understanding of the psychosocial problems associated with HS and their contexts qualitative methods are of relevance. Because of their explorative nature qualitative methods can provide new points of view about a given problem (9).

Furthermore, an increased and specified understanding of topics suggested by quantitative surveys, such as the Dermatology Life Quality Index (DLQI) (10), may be obtained through interviews. Quantitative surveys based on DLQI show that HS has a significant effect on the quality of life (QoL) of patients with HS (4, 6, 7). Matusiak et al. (7) showed that HS has a large or extremely large effect on patients’ QoL in nearly 60% of examined patients. Both Matusiak et al. (7) and von der Werth & Jemec (4) note that HS appears to cause greater impairment in QoL than do other dermatoses. The disease may therefore be expected to have considerable associated psychosocial problems. In order to provide a better understanding of the life situation of patients with HS it is therefore of urgent importance to specify and clarify these problems.

Dermatology for Skin of Color

Genetic Skin Disorders

Hidradenitis Suppurativa

Excerpta medica, Dermatology and venereology

Primer on the rheumatic diseases