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The outcomes of Perthes' disease
Donato G Leo1, Helen Jones1, Rebecca Murphy1
1School of Sport & Exercise Sciences, Liverpool John Moores University, Liverpool, UK.
Insights
A Core Outcome Set (COS) was developed for Perthes' disease, standardizing outcomes for research and clinical practice. This aims to improve treatment effectiveness and communication for children with this hip condition.
Area of Science:
- Pediatric Orthopedics
- Clinical Trial Methodology
- Health Outcomes Research
Background:
- Perthes' disease affects children's hips, necessitating standardized outcome measures.
- Current research and clinical practice lack a unified approach to evaluating outcomes for Perthes' disease.
- The COMET-Initiative (Core Outcome Measures in Effectiveness Trials) provides a framework for developing such standards.
Purpose of the Study:
- To establish a consensus-driven Core Outcome Set (COS) for Perthes' disease.
- To identify key physical, emotional, and social outcomes for clinical practice and research.
- To enhance standardization and communication in Perthes' disease management.
Main Methods:
- Systematic literature review to identify reported outcomes.
- Qualitative study to capture patient and family experiences.
- Two-round Delphi survey involving patients, parents, and surgeons.
- Final consensus meeting with stakeholders.
Main Results:
- 38 outcomes were evaluated in the Delphi survey.
- 16 outcomes met the 70% importance threshold.
- A final Core Outcome Set (COS) of 14 outcomes was established.
- Outcomes covered adverse events, life impact, resource use, and more.
Conclusions:
- Core Outcome Sets (COSs) are crucial for standardizing research and improving communication.
- This COS will facilitate high-quality clinical research for optimal Perthes' disease treatments.
- The developed COS will aid clinicians, patients, and funding bodies in evaluating treatment efficacy.
Aims:
To identify a suite of the key physical, emotional, and social outcomes to be employed in clinical practice and research concerning Perthes' disease in children.
Methods:
The study follows the guidelines of the COMET-Initiative (Core Outcome Measures in Effectiveness Trials). A systematic review of the literature was performed to identify a list of outcomes reported in previous studies, which was supplemented by a qualitative study exploring the experiences of families affected by Perthes' disease. Collectively, these outcomes formed the basis of a Delphi survey (two rounds), where 18 patients with Perthes' disease, 46 parents, and 36 orthopaedic surgeons rated each outcome for importance. The International Perthes Study Group (IPSG) (Dallas, Texas, USA (October 2018)) discussed outcomes that failed to reach any consensus (either 'in' or 'out') before a final consensus meeting with representatives of surgeons, patients, and parents.
Results:
In total, 23 different outcome domains were identified from the systematic review, and a further ten from qualitative interviews. After round one of the Delphi survey, participants suggested five further outcome domains. A total of 38 outcomes were scored in round two of the Delphi. Among these, 16 outcomes were scored over the prespecified 70% threshold for importance (divided into six main categories: adverse events; life impact; resource use; pathophysiological manifestations; death; and technical considerations). Following the final consensus meeting, 14 outcomes were included in the final Core Outcome Set (COS).
Conclusion:
Core Outcome Sets (COSs) are important to improve standardization of outcomes in clinical research and to aid communication between patients, clinicians, and funding bodies. The results of this study should be a catalyst to develop high-quality clinical research in order to determine the optimal treatments for children with Perthes' disease. Cite this article: Bone Joint J 2020;102-B(5):611-617.
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