THE NEED FOR A CORE OUTCOME SETS FOR LOWER LIMB ORTHOPAEDIC INTERVENTIONS IN AMBULANT CHILDREN WITH CEREBRAL PALSY

H. Almoajil^1,2, H. Dawes³, S. Hopewell⁴, F. Toye⁵, T. Theologis^1,6

Background: Musculoskeletal deformities is common features in ambulatory cerebral palsy (CP). Deformity correction through lower limb orthopaedic surgery is the standard form of care aimed at improving or preserving motor function. There is a heterogeneity of reported outcomes in the literature, and this can make it difficult to compare and contrast studies. The reported outcomes do not always take the needs and expectations of children and families into account. A core outcome set (COS) that included a diverse perspective would enhance the efficiency and relevance of outcome in clinical practice and research. Systematic reviews of quantitative studies are widely used to identify outcomes. Qualitative Evidence Synthesis can highlight outcomes of important to different stakeholders, including patients and carers, but has not been used in core outcome set development for CP population.

Purpose: (1) To synthesise previous reported outcomes in the lower limb orthopaedic interventions for CP literatures,
(2) To determine the potential added value of qualitative synthesis alongside quantitative review of outcomes to inform core outcome set development.

Methods: Two separate synthesis were conducted: (1) A scoping review of outcomes used in clinical trials, and (2) A qualitative evidence synthesis of children and parent’s perspectives on lower limb orthopaedic interventions. Multiple sources were searched (MEDLINE, EMBASE, CINHAL, PsychINFO, PubMed and Cochrane Controlled-Trials Registry). Two reviewers screened a total of 14,015 studies against inclusion criteria. The Critical Appraisal Skills Programme was used to appraise identified qualitative studies. The “Best-Fit Framework” was used for synthesis. The International Classification of Functioning-Children and Youth (ICF-CY) linking rules were used to classify identified outcomes into components alongside inductive thematic analysis.

Results: Fifty studies were identified (44 quantitative, 6 qualitative). Each review identified a unique list of outcome domains: (1) 40 different outcomes were identified from scoping review. These focused predominantly on body structure and function domains, such as gait pathology. Only 13 out of 44 studies reported adverse effects. Only 10, more recent, studies included patient-reported outcomes. (2) 27 outcomes were identified from the qualitative evidence synthesis. Most of these outcomes were categorised under the activity and participation domain of the ICF-CY. In particular, children and parents were striving to improve walking ability and to be able to socialise with others.

Conclusion(s): These findings demonstrate that synthesis of the qualitative research can add value to our understanding of relevant outcome following orthopaedic interventions by identifying additional outcomes to those reported in clinical trials and are of importance to children and parents. The review also highlights a variation in outcome reporting which undermines the usefulness of research. We recommend that the views of all children with CP and their parents/carers on the outcomes of importance should be considered when evaluating lower limb orthopaedic interventions. The findings highlight the need for a core outcome set development in this field to ensure consistent reporting of outcomes that are of relevant to all stakeholders.

Funding, acknowledgements: Imam Abdulrahman Bin Faisal University
Oxford Medical Research Centre
Elizabeth Casson Trust
The NIHR Oxford Health
Biomedical Research Centre

Keywords: Cerebral Palsy, Lower limb surgery and rehabilitation, Musculoskeletal deformity

Topic: Paediatrics: cerebral palsy

Did this work require ethics approval? No

Institution: N/A

Committee: N/A

Reason: Is a scoping review and qualitative evidence synthesis