Galloway, A.M., Pini, S., Holton, C. et al. (4 more authors) (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. ISSN 2633-1462
Abstract
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.
Metadata
Item Type: | Article |
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Authors/Creators: |
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Copyright, Publisher and Additional Information: | © 2023 Author(s) et al. This is an open-access article distributed under the terms of the Creative Commons Attribution Non-Commercial No Derivatives (CC BY-NC-ND 4.0) licence, which permits the copying and redistribution of the work only, and provided the original author and source are credited. See https://creativecommons.org/licenses/by-nc-nd/4.0/ |
Keywords: | Perthes' disease; Paediatric orthopaedics; Qualitative research; Interviews |
Dates: |
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Institution: | The University of Leeds |
Academic Units: | The University of Leeds > Faculty of Medicine and Health (Leeds) > School of Medicine (Leeds) > Leeds Institute of Health Sciences (Leeds) > Academic Unit of Primary Care (Leeds) The University of Leeds > Faculty of Medicine and Health (Leeds) > School of Medicine (Leeds) > Institute of Rheumatology & Musculoskeletal Medicine (LIRMM) (Leeds) > Clinical Biomechanic & Physical Med (LIRMM) (Leeds) |
Funding Information: | Funder Grant number NIHR National Inst Health Research NIHR 301582 |
Depositing User: | Symplectic Publications |
Date Deposited: | 14 Dec 2023 11:44 |
Last Modified: | 05 Feb 2024 16:48 |
Published Version: | https://boneandjoint.org.uk/Article/10.1302/2633-1... |
Status: | Published |
Publisher: | British Editorial Society of Bone and Joint Surgery |
Identification Number: | 10.1302/2633-1462.410.BJO |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:206616 |