The development of a person-centred core outcome set for adolescents and young adults with spinal deformity undergoing treatment (SPINE-COS-AYA)

A Core Outcome Set (COS) for treatment of spinal deformity in Adolescents and Young Adults (AYA) is essential to ensure that appropriate outcomes are evaluated consistently, facilitating high-quality trials of different treatment modalities including less invasive surgical techniques and informing the routine collection of clinical data within international spine registries (e.g. the British Spine Registry). It is important to include a diverse range of key stakeholders in COS development, in recognition of what constitutes a successful outcome and the meaning attributed to an outcome can vary between healthcare professionals (HCPs) and it is known that HCPs may overlook outcomes which are important to patients or their families. The study aims to address the second priority from a recent Priority Setting Partnership towards ensuring outcomes are measured in ways that are meaningful to patients, and in doing so will add to the limited understanding of treatment as experienced by AYA and family members.


Co-PI: Dr Lisa Graham-Wisener (Queen’s University Belfast)
Co-PI: Dr Paul Toner (Queen’s University Belfast)
Co-I: Prof. Mike Clarke (Queen’s University Belfast)

Further Study Information

Current Stage: Ongoing
Date: November 2020 - February 2022
Funding source(s): Phase 1 Core Outcome Domains (COD) development: British Scoliosis Research Foundation

Health Area

Disease Category: Orthopaedics & trauma

Disease Name: Scoliosis

Target Population

Age Range: 10 - 25

Sex: Either

Nature of Intervention: Any

Stakeholders Involved

- Charities
- Clinical experts
- Consumers (caregivers)
- Consumers (patients)
- Economists
- Epidemiologists
- Ethicists
- Families
- Journal editors
- Methodologists
- Patient/ support group representatives
- Policy makers
- Researchers
- Service commissioners
- Service providers
- Service users
- Statisticians

Study Type

- COS for clinical trials or clinical research
- COS for practice


- Consensus conference
- Delphi process
- Focus group(s)
- Interview
- Nominal group technique (NGT)
- Semi structured discussion
- Systematic review

Phase 1. Potential core outcome domains identified from qualitative interviews
Stakeholder perspectives - AYA patients, parents and healthcare professionals in Higher and Low/Middle Income Countries
Young Person Advisory Groups and Study Management Group workshops towards consolidation of a longlist of candidate outcome domains
Phase 2. International Delphi Consensus Process

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