Thematic synthesis of the experiences of people with hidradenitis suppurativa: a systematic review*

Abstract

Background Although hidradenitis suppurativa (HS) is known to affect quality of life, little summative knowledge exists on how HS impacts people living with the condition. Objectives To synthesize experiences of people with HS within published qualitative research. Methods Searches on databases MEDLINE, PsycINFO, Embase and CINAHL were conducted on 17 April 2020. Two independent reviewers screened 5512 publications. Study quality was assessed using the National Institute for Health and Care Excellence quality appraisal checklist for qualitative studies. Thematic synthesis generated descriptive and analytic themes. Results Fourteen studies were included: four studies fulfilled most quality criteria, eight fulfilled some quality criteria, and two fulfilled few quality criteria. There were three final themes. (i) Putting the brakes on life. The physical, psychological and social consequences of HS resulted in people missing out on multiple life events. This could have a cumulative effect that influences the trajectory of someone's life. (ii) A stigmatized identity: concealed and revealed. People try to conceal their HS, visually and verbally, but this results in anticipation and fear of exposure. Social support and psychological acceptance helped people cope. Connecting to others with HS may have a specific role in preserving a positive selfidentity. (iii) Falling through the cracks. Delayed diagnosis, misdiagnosis and lack of access to care were reported. People felt unheard and misunderstood by healthcare professionals, and healthcare interactions could enhance feelings of shame. Conclusions There need to be improvements to clinical care to allow people with HS to live their life more fully.What is already known about this topic?• A James Lind Alliance priority setting partnership for hidradenitis suppurativa (HS) identified 'What is the impact of HS and the treatments on people with HS (physical, psychological, financial, social, quality of life)' as a top research priority of patients and healthcare professionals.• Understanding experiences of HS can identify areas for future research and areas requiring improvement in clinical care.• Qualitative metasyntheses can generate new insights beyond findings from individual studies.

Hidradenitis Suppurativa’s Impact on Social Activities: An Observational Study

“…Hidradenitis suppurativa (HS) is a debilitating, inflammatory condition of apocrine-bearing skin, characterized by nodules, abscesses, fistulae, and sinus tract formation [ 1 ]. Multiple aspects of patients’ lives are negatively affected and patients frequently report feeling isolated [ 2 , 3 ]. There is limited information on how HS may impact patients’ participation in everyday social activities.…”

The prevalence of hidradenitis suppurativa outside the hospital setting: the impact of the undiagnosed

“…Patients with hidradenitis suppurativa (HS) experience a significant delay from disease onset to diagnosis, estimated globally at 7·2 years 1 . This is related to multiple factors including under‐recognition by doctors, embarrassment and stigma associated with the disease, and socioeconomic barriers 1–3 . Global prevalence estimates vary widely, from as low as 0·1% up to 4% in one European study 4–6 .…”

Hidradenitis suppurativa: redirecting a life trajectory

“…In this issue of the BJD, Howells et al describe themes from a systematic review of qualitative studies examining experiences of people living with HS. 2 This review included 14 studies with patients ranging from 18 to 74 years of age. Collated descriptive themes in this review include HS symptoms (particularly pain), the struggle with daily life activities, suffering from the psychological impact of HS, challenges and coping mechanisms to adjust to life with HS, as well as delayed and limited access to supportive healthcare professionals and efficacious, safe and financially accessible treatments.…”

“…‘Unbearable’, ‘unendurable’, ‘nightmare’, ‘suffering’ and ‘helpless’ 2 are words that convey the despair many patients with HS face. To bring hope to their despair, researchers, clinicians, advocates and industry partners must all continue working towards a common goal: to redirect life trajectories that have been thrown off course by this terrible disease.…”

“…In this issue of the BJD , Howells et al. describe themes from a systematic review of qualitative studies examining experiences of people living with HS 2 . This review included 14 studies with patients ranging from 18 to 74 years of age.…”