“等待你生命中最美好的一天”。一项关于佩特兹氏病患者及临床医生经历的定性访谈研究。
"Waiting for the best day of your life". A qualitative interview study of patients' and clinicians' experiences of Perthes' disease.
作者信息
Galloway Adam M, Pini Simon, Holton Colin, Perry Daniel C, Redmond Anthony, Siddle Heidi J, Richards Suzanne
机构信息
Leeds Teaching Hospitals NHS Trust and University of Leeds, Leeds, UK.
Leeds Institute of Health Science, University of Leeds, Leeds, UK.
出版信息
Bone Jt Open. 2023 Oct 2;4(10):735-741. doi: 10.1302/2633-1462.410.BJO-2023-0108.R1.
AIMS
Perthes' disease is an idiopathic avascular necrosis of the developing femoral head, often causing deformity that impairs physical function. Current treatments aim to optimize the joint reaction force across the hip by enhancing congruency between the acetabulum and femoral head. Despite a century of research, there is no consensus regarding the optimal treatment. The aim of this study was to describe the experiences of children, their families, and clinicians when considering the treatment of Perthes' disease.
METHODS
A qualitative study gathered information from children and their families affected by Perthes' disease, along with treating clinicians. Interviews followed a coding framework, with the interview schedule informed by behavioural theory and patient and public involvement. Transcripts were analyzed using the framework method.
RESULTS
A total of 24 interviews took place, with 12 child/family dyads and 12 clinicians from UK NHS centres. Interviews identified widespread variation of routine care. Children/their families recounted positive experiences when included in the decision-making process for treatment. There is a strong desire from clinicians and children/families for consistent guidance from everyone involved in care, which should be based on clinical consensus.
CONCLUSION
This is the first study to describe how children/families and clinicians experienced receiving or providing treatment in Perthes' disease. The results indicate the need for robust evidence to support treatment decisions. Children and families valued feeling involved in the clinical decision-making process. Clinicians acknowledged the central importance of providing patient-centred care, particularly in the absence of robust evidence to guide the optimal treatment decisions. This study will inform a future Delphi project to develop clinical consensus guidelines for the treatment of Perthes' disease.
目的
佩特兹病是发育中的股骨头特发性缺血性坏死，常导致畸形，损害身体功能。目前的治疗旨在通过增强髋臼与股骨头之间的一致性来优化髋关节的关节反应力。尽管经过了一个世纪的研究，但对于最佳治疗方法仍未达成共识。本研究的目的是描述儿童及其家庭以及临床医生在考虑佩特兹病治疗时的经历。
方法
一项定性研究收集了受佩特兹病影响的儿童及其家庭以及治疗临床医生的信息。访谈遵循一个编码框架，访谈时间表以行为理论以及患者和公众参与为依据。使用框架方法对访谈记录进行分析。
结果
共进行了24次访谈，其中包括12个儿童/家庭二元组和来自英国国民健康服务中心的12名临床医生。访谈发现常规护理存在广泛差异。儿童及其家庭讲述了在参与治疗决策过程中的积极经历。临床医生以及儿童/家庭强烈希望参与护理的每个人都能提供一致的指导，且这种指导应以临床共识为基础。
结论
这是第一项描述儿童/家庭和临床医生在佩特兹病治疗中接受或提供治疗体验的研究。结果表明需要有力的证据来支持治疗决策。儿童和家庭重视参与临床决策过程的感受。临床医生承认提供以患者为中心的护理至关重要，特别是在缺乏有力证据指导最佳治疗决策的情况下。本研究将为未来的德尔菲项目提供信息，以制定佩特兹病治疗的临床共识指南。
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