Cancer Quality of Life Metric Project – Lessons learned from an implementation pilot


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Alice Simon1,Sarah Gelcich2,Adam Glaser3,Andria Hanbury4,Luke Hounsome5,Jane Maher6,Erik Mayer7,Alison Richardson8,Simon Rogers9,Lesley Smith10,Galina Velikova2,and the NHS England Cancer Quality of Life Working and Steering Groups10
1NHS England, London UK,2University of Leeds, Leeds, UK,3University of Leeds,4York Health Economics Consortium, York, UK,5Public Health England,6Macmillan Cancer Support, London UK, Mount Vernon Cancer Centre, Northwood, UK,7Imperial College Healthcare NHS Trust, London, UK, The Royal Marsden NHS Foundation Trust, London, UK,8University of Southampton and University Hospital Southampton NHS Foundation Trust, Southampton, UK,9Aintree University Hospital NHS Foundation Trust, Liverpool, UK,10NHS England, London, UK

Abstract

Background

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.

Method

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.

Results

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.

Conclusion

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.