Medlock, Caitlin Lucy; (2025) Development of a Core Outcome Set to evaluate the impact of prognostication in people living with advanced cancer. Doctoral thesis (Ph.D), UCL (University College London).

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Abstract

BACKGROUND: Before a prognostic model can be implemented in clinical practice, its impact on patient and healthcare outcomes must be demonstrated. To evaluate this impact through clinical trials, it is crucial to address the inherent variability in outcome selection, collection, and reporting. Currently, there is no clear agreement on the key outcomes to evaluate the impact of prognostication. A Core Outcome Set (COS) is a standardised list of key outcomes identified by stakeholders, enabling comparability and standardisation across studies. Developing a COS would enabling the exploration of the broader effects of prognostication beyond accuracy. AIM: To develop a COS for evaluating the impact of prognostication in people living with advanced cancer. METHODS: A three-phase, mixed methods approach was used: 1) a systematic review of existing literature to identify outcomes currently used in prognostic studies of advanced cancer; 2) semi-structured interviews with patients with advanced cancer, informal caregivers, and clinicians, to explore their perceptions and experiences of prognostication; and 3) a modified Delphi survey designed to achieve consensus on the most important outcomes, followed by a consensus meeting to finalise the COS. RESULTS: The systematic review identified 70 outcomes, whilst the interviews contributed an additional 16. After consolidation, 67 outcomes were presented in the Delphi survey. Consensus was reached on 34 outcomes after two rounds of the survey. Finally, during the consensus meeting, nine outcomes were identified as core. These core outcomes were physical functioning, psychological/mental status, quality of life, treatment/care preferences, end-of-life/advance care planning, place of care, quality of death, prognostic understanding, and practical/logistical preparation for end-of-life. CONCLUSION: This study successfully developed a COS that reflects the priorities of key stakeholders. Adopting this COS in future prognostic research has the potential to standardise outcome selection, collection, and reporting, thus enabling data synthesis across studies, and strengthening the evidence base on the broader impact of prognostication.

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