Aimar Kelsey, Baker Daniel M, Li Elizabeth, Lee Matthew J
Department of Colorectal Surgery, University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK.
Leeds Teaching Hospitals NHS Trust, Leeds, UK.
Colorectal Dis. 2025 Jan;27(1):e17295. doi: 10.1111/codi.17295.
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.
由于在常规采用的多种手术方法上缺乏共识，藏毛窦疾病（PSD）带来了重大的治疗挑战，这促使人们重新关注患者体验。本研究的目的是探索PSD患者的生活经历，以便为未来以患者为中心的治疗提供更好的信息。
进行了一项系统综述，以识别报告关于PSD生活经历的定性研究的论文。使用预定义的搜索策略搜索MEDLINE、EMBASE和CINAHL数据库。在每个阶段对研究进行双重筛选，冲突由第三位评审员解决。提取分析框架以及支持性引语。采用元民族志方法，根据eMERGe元民族志协议系统地比较和综合框架。该研究已在PROSPERO（CRD42024495608）上注册。
纳入了涵盖三项研究的四篇全文。出现了三个关键主题：（1）对日常生活活动的干扰；（2）对心理健康的影响；（3）应对医疗保健。由于担心症状加重和伤口并发症，身体活动的减少是由患者主导的。PSD对自我认知和情绪状态有复杂的影响，导致与他人关系的改变。这在很大程度上是由于在伤口护理方面被迫依赖他人。最后一个主题强调了由于患者对PSD缺乏认识而对意外疾病病程和结果的担忧。
本研究有助于更深入地理解PSD患者的经历，并确定了应指导未来临床实践和研究的建议。
