"Waiting for the best day of your life". A qualitative interview study of patients' and clinicians' experiences of Perthes' disease.

Galloway, Adam M ORCID: 0000-0002-6093-7669, Pini, Simon ORCID: 0000-0001-8455-3240, Holton, Colin, Perry, Daniel C ORCID: 0000-0001-8420-8252, Redmond, Anthony ORCID: 0000-0002-8709-9992, Siddle, Heidi J ORCID: 0000-0002-6015-332X and Richards, Suzanne ORCID: 0000-0003-1416-0569 (2023) "Waiting for the best day of your life". A qualitative interview study of patients' and clinicians' experiences of Perthes' disease. Bone & joint open, 4 (10). pp. 735-741.

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Abstract

<h4>Aims</h4>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.<h4>Methods</h4>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.<h4>Results</h4>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.<h4>Conclusion</h4>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.

Item Type:	Article
Uncontrolled Keywords:	Clinical Research, Behavioral and Social Science, Pediatric, 7 Management of diseases and conditions, 7.3 Management and decision making, 3 Good Health and Well Being
Divisions:	Faculty of Health and Life Sciences Faculty of Health and Life Sciences > Institute of Life Courses and Medical Sciences
Depositing User:	Symplectic Admin
Date Deposited:	30 Nov 2023 16:43
Last Modified:	14 Mar 2024 22:21
DOI:	10.1302/2633-1462.410.bjo-2023-0108.r1
Open Access URL:	https://doi.org/10.1302/2633-1462.410.BJO-2023-010...
Related URLs:	Author Publisher
URI:	https://livrepository.liverpool.ac.uk/id/eprint/3177109