Life after prostate cancer diagnosis: protocol for a UK-wide patient-reported outcomes study

Prostate cancer and its treatment may impact physically, psychologically and socially; affecting the health-related quality of life of men and their partners/spouses. The Life After Prostate Cancer Diagnosis (LAPCD) study is a UK-wide patient-reported outcomes study which will generate information to improve the health and well-being of men with prostate cancer.

Postal surveys will be sent to prostate cancer survivors (18-42 months postdiagnosis) in all 4 UK countries (n=∼70 000). Eligible men will be identified and/or verified through cancer registration systems. Men will be surveyed twice, 12 months apart, to explore changes in outcomes over time. Second, separate cohorts will be surveyed once and the design will include evaluation of the acceptability of online survey tools. A comprehensive patient-reported outcome measure has been developed using generic and specific instruments with proven psychometric properties and relevance in national and international studies. The outcome data will be linked with administrative health data (eg, treatment information from hospital data). To ensure detailed understanding of issues of importance, qualitative interviews will be undertaken with a sample of men who complete the survey across the UK (n=∼150) along with a small number of partners/spouses (n=∼30).

The study has received the following approvals: Newcastle and North Tyneside 1 Research Ethics Committee (15/NE/0036), Health Research Authority Confidentiality Advisory Group (15/CAG/0110), NHS Scotland Public Benefit and Privacy Panel (0516-0364), Office of Research Ethics Northern Ireland (16/NI/0073) and NHS R&D approval from Wales, Scotland and Northern Ireland. Using traditional and innovative methods, the results will be made available to men and their partners/spouses, the funders, the NHS, social care, voluntary sector organisations and other researchers.

BMJ open. 2016 Jan 07*** epublish ***

Amy Downing, Penny Wright, Richard Wagland, Eila Watson, Therese Kearney, Rebecca Mottram, Majorie Allen, Victoria Cairnduff, Oonagh McSorley, Hugh Butcher, Luke Hounsome, Conan Donnelly, Peter Selby, Paul Kind, William Cross, James W H Catto, Dyfed Huws, David H Brewster, Emma McNair, Lauren Matheson, Carol Rivas, Johana Nayoan, Mike Horton, Jessica Corner, Julia Verne, Anna Gavin, Adam W Glaser

Leeds Institute of Cancer and Pathology, St James's University Hospital, Leeds, UK., Faculty of Health Sciences, University of Southampton, Southampton, UK., Faculty of Health and Life Sciences, Department of Applied Health and Professional Development, Oxford Brookes University, Oxford, UK., Northern Ireland Cancer Registry, Queens University Belfast, Royal Victoria Hospital, Belfast, UK., National Cancer Registration and Analysis Service, Public Health England, Bristol, UK., Academic Unit of Health Economics, Institute of Health Sciences, University of Leeds, Leeds, UK., Leeds Teaching Hospitals NHS Trust, St James's University Hospital, Leeds, UK., Academic Urology Unit, University of Sheffield, Medical School, Sheffield, UK., Welsh Cancer Intelligence and Surveillance Unit, Cardiff, UK., Public Health and Intelligence (NHS National Services Scotland), Edinburgh, UK., Knowledge and Intelligence Directorate, Public Health England, Bristol, UK.