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

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Description: 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.

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