Lived experience of pilonidal sinus disease: Systematic review and meta-ethnography

Pilonidal sinus disease (PSD) poses significant treatment challenges due to a lack of consensus on the diverse range of surgical approaches routinely employed, prompting a renewed focus on the patient experience. The aim of this study was to explore the lived experience of patients with PSD to better inform future person-centred treatment.

A systematic review was performed to identify papers reporting qualitative studies on the lived experience of PSD. The MEDLINE, EMBASE and CINAHL databases were searched, using a predefined search strategy. Studies were dual screened at each stage, with conflicts resolved by a third reviewer. Analytical frameworks were extracted, along with supporting quotes. A meta-ethnographic approach was used to systemically compare and synthesize frameworks in line with the eMERGe meta-ethnography protocol. The study was registered on PROSPERO (CRD42024495608).

Four full texts covering three studies were included. Three key themes emerged: (1) disruption to activities of daily living; (2) impact on psychological well-being; (3) navigating healthcare. Reduction of physical activity was patient-led, owing to fears of exacerbating symptoms and wound complications. PSD had a complex influence on self-perception and emotional state, leading to changed relationships with others. This was largely driven by the forced reliance on others for wound care. The final theme highlighted concerns regarding unexpected disease course and outcomes stemming from a lack of patient awareness of PSD.

This study informs a more sophisticated understanding of the experience of individuals living with PSD and has identified recommendations that should guide future clinical practice and research.