Thematic synthesis of the experiences of people with Hidradenitis Suppurativa: a systematic review

BackgroundAlthough Hidradenitis Suppurativa (HS) is known to affect quality of life, little summative knowledge exists on how HS impacts people living with the condition.Aimto synthesise experiences of people with HS within published qualitative research.MethodsSearches on databases MEDLINE, PsycINFO, EMBASE and CINHAL were conducted on 17th April 2020. Two independent reviewers screened 5512 publications. Study quality was assessed using the National Institute for Health and Care Excellence (NICE) quality appraisal checklist for qualitative studies. Thematic synthesis generated descriptive and analytic themes.ResultsFourteen studies were included. Four studies fulfilled most quality criteria, eight studies fulfilled some quality criteria, and two studies fulfilled few quality criteria. There were three final themes. 1) 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. 2) A stigmatised identity: concealed and revealed – People try to conceal their HS, visually and verbally, but this results anticipation and fear of exposure. Social support and psychological acceptance helped people cope. Connection with others with HS may have a specific role in preserving a positive self-identity. 3) 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.ConclusionsThere needs to be improvements to clinical care to allow people with HS to live their life more fully