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

Summary 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 self‐identity. (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. What does this study add? We show the breadth of physical, psychological and social challenges of living with HS. We illustrate the stigma felt by people with HS, how individuals attempt to conceal their condition, and how soc