This project aims to develop a COS specifically for Selective Dorsal Rhizotomy (SDR) in ambulant children and young people with cerebral palsy. SDR is a distinct neurosurgical procedure with unique goals, risks, and long term rehabilitation demands. Because SDR has its own outcome profile and current studies report outcomes inconsistently, specific COS is essential. It will standardize reporting, improve comparability across studies, and ensure that future research reflects what truly matters to children and families. Therefore, an SDR-focused COS is needed to address these gaps and guide more meaningful and consistent outcome measurement.
ContributorsRaghad Alnujayban
Supervisors: Dr. Tim Theologis and Dr. Philippa Nicolson.
Affiliation: University of Oxford.
Disease Category: Child health
Disease Name: Cerebral palsy
Age Range: 3 - 18
Sex: Either
Nature of Intervention: Surgery, Procedure
- Clinical experts
- Consumers (caregivers)
- Consumers (patients)
- Families
- Patient/ support group representatives
- Service providers
- Service users
- COS for clinical trials or clinical research
- Consensus meeting
- Delphi process
- Interview
- Literature review
- Semi structured discussion
- Systematic review
This project uses a multi-phase mixed-methods design following COMET and COS-STAP guidelines to develop a COS.
First, a qualitative evidence synthesis will identify outcomes that reflect children’s and families’ lived experiences after SDR. A scoping review will then map all outcome domains and measures currently used in SDR research and clinical practice.
Next, a qualitative study will involve semi-structured interviews with children and young people who have undergone SDR, their caregivers, and clinicians to explore which outcomes they consider most important. Findings from these phases will generate a comprehensive list of potential outcome domains.
A two-round Delphi survey with stakeholders will be then conducted to prioritize these outcomes and identify areas of consensus. A consensus meeting will then finalize the COS.
Finally, existing tools will be reviewed to develop a Core Outcome Measurement Set (COMS) by evaluating and selecting valid and feasible instruments for each outcome domain.