Cancer Quality of Life Metric Project – Lessons learned from an implementation pilot
Session type: Poster / e-Poster / Silent Theatre session
Quality of life (QoL) outcomes are important to patients. The NHS long term plan recognises this issue. A feasibility and acceptability pilot in cancer patients is testing data collection and production of QoL metric scores to support patient, regional and national level monitoring.
Five Cancer Alliances (in seven hospital trusts) are testing data collection processes. Breast, prostate and colorectal cancer patients complete two questionnaires (EQ-5D; EORTC QLQ-C30). Patients are invited to the survey using an electronic platform. Non-responders are reminded with an option to use a paper questionnaire. A subset of patients is asked to repeat the survey 6-months later. Responses are linked to demographic, disease and treatment data held by the National Cancer Registration and Analysis Service. Analyses are testing appropriateness of different summary or sub-scores for benchmarking QoL outcomes. A small-scale test providing individual-level feedback to patients and clinicians is included. A process evaluation includes qualitative interviews and focus groups with administrators, patients and clinicians, plus quantitative monitoring of coverage and uptake.
To date, N=3441 patients have been invited to participate with N=1758 (51%) completing questionnaires. N=1003 (57%) completed electronically and N=755 (43%) by paper. Qualitative evaluations highlighted challenges in identifying, inviting and reporting on cancer patients. Patients supported the use of the two questionnaires for metric monitoring, but also recommended inclusion of cancer-specific questionnaires. Patients prefer a traffic-light visual summary of their data rather than figures alone.
Both electronic and paper options for completion are necessary. Data collection systems must have as little impact on the delivery of care as possible. Summary data should integrate into care pathways to facilitate support that underpins improvements in patient outcomes. Through the collection of national data and appropriate case-mix adjustments, it will be possible to give clear expectations of outcomes for patients with different tumour sites and clinical characteristics.