P14.18 Patient and Public Involvement to define patient-centred outcomes from National Cancer Datasets. (9th September 2021)

• Record Type: Journal Article
• Authors: Pakzad-Shahabi, L; Cherrington, C; Brassil, N; Even, P; Gardner, D; Fulcher, W; Le Calvez, K; Mauricaite, R; Williams, M
• Is Part Of: Neuro-oncology. Volume 23: Supplement 2 (2021)
• Page Start: ii41
• Page End: ii41
• Publication Date: 2021-09-09
• Subjects: Brain Neoplasms -- Periodicals; Brain -- Tumors -- Periodicals; Brain -- Cancer -- Periodicals; Nervous system -- Cancer -- Periodicals; 616.99481
• DOI: 10.1093/neuonc/noab180.141
• Languages: English
• ISSNs: 1522-8517

Abstract

Abstract: BACKGROUND: GlioCova uses linked national cancer data on all 51 000 adult patients with a primary brain tumour in England (2013 - 2018) to understand patterns of care, treatment, and outcomes in patients with glioma (http://wwwf.imperial.ac.uk/blog/gliocova/ ). A key aim is the use of patient and carer input in defining patient-centered outcomes. We have held multiple Patient & Public Involvement (PPI) sessions with patients and carergivers and data analysts to understand what patient and caregivers want to know about brain tumours. MATERIAL AND METHOD: We used a modified Delphi method. The online PPI sessions (Zoom) consisted of two presentations, open discussions, and Q&As. We made the sessions as interactive as possible by using Mentimeter and an interactive online white board (Explain Everything). Pre-reading material was circulated via email. Attendees (6–14 per session) covered a wide range of ages (30–75), diagnoses (GBM, recurrent gliomas, low grade gliomas, ependymoma); patients, caregivers, neuro-oncology staff, data analysts and basic scientists. Work was conducted in line with the INVOLVE PPI guidance. RESULTS: We identified four questions that were of interest to patients and had correlates in the data: Potential symptoms experienced 3-months pre-diagnosis; Side effects, 3-months post-diagnosis; The survival following different treatments (i.e., surgery only, radiotherapy only); Demographics of patients who finished/ did not finish 6 cycles of temozolomide; Patients and caregivers were also interested in the impact of diet, quality of life, social life, and exercise. However, these data cannot be answered using the current national data. CONCLUSION: Our PPI work has helped us to identify and prioritise questions to ask of the data. Ongoing PPI work will provide a wider perspective and identify knowledge gaps for future research. Patients and caregivers report feeling empowered, being part of a team, feeling like they had given something back and done something meaningful for the research community and other patients. Patients and caregivers also felt that they had an enriched understanding of the data that is collected. As this process is an iterative process, we will hold more PPI sessions to identify and prioritise topics to analyse.