Life After Prostate Cancer Diagnosis (LAPCD)

Amy DOWNING, University of Leeds, United Kingdom
WRIGHT P. 1 , WAGLAND R. 2 , WATSON E. 3 , BUTCHER H. 4 , HOUNSOME L. 5 , DONNELLY C. 6 , KEARNEY T. 6 , MOTTRAM R. 1 , ALLEN M. 1 , SELBY P. 1 , KIND P. 1 , CORNER J. 2 , VERNE J. 5 , GAVIN A. 6 , GLASER A. 1

1 University of Leeds, Leeds, United Kingdom
2 University of Southampton, Southampton, United Kingdom
3 Oxford Bookes University, Oxford, United Kingdom
4 User Representative, LAPCD User Advisory Group
5 Public Health England, United Kingdom
6 N. Ireland Cancer Registry, Belfast, N. Ireland

Prostate cancer may impact physically, psychologically and socially affecting health-related quality of life (HRQL) of men and their partners/spouses. The LAPCD study aims to:
 
describe HRQL of men with prostate cancer using qualitative and quantitative methods;
explore if and how HRQL is associated with or predicted by disease, treatment and/or patient characteristics with a view to informing healthcare policy and service
delivery;
describe levels of patient empowerment and explore the interaction between patient empowerment and HRQL;
undertake a study of men without prostate cancer to determine community levels of symptoms for comparison.
 
Methods: We will survey prostate cancer survivors in all four UK countries diagnosed between 18–42 months post-diagnosis, identified through cancer registration systems (~100,000). Men will be surveyed twice, 12 months apart, to determine changes in outcomes over time. We plan to survey second de novo cohorts once and will investigate the acceptability of online survey tools.  To ensure detailed understanding of issues of importance, we will interview a sample of men who complete the survey (~150) along with a small number of partners/spouses (~30). We have developed a comprehensive Patient Reported Outcome Measure (PROM) 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 (e.g. treatment information
from hospital data).
 
Reporting plans: The first surveys are underway with preliminary results available June 2016.  Aggregated results will be available to men and their partners/spouses, the funders, the health service, social care, voluntary sector organisations and other researchers. This 3-year study will provide data to steer service improvements, produce information to help men when making treatment decisions, and inform future research. This study is funded by Prostate Cancer UK and the Movember Foundation and linked closely with national cancer registries.