TY - JOUR
T1 - Life after prostate cancer diagnosis
T2 - Protocol for a UK-wide patient-reported outcomes study
AU - Downing, Amy
AU - Wright, Penny
AU - Wagland, Richard
AU - Watson, Eila
AU - Kearney, Therese
AU - Mottram, Rebecca
AU - Allen, Majorie
AU - Cairnduff, Victoria
AU - Mcsorley, Oonagh
AU - Butcher, Hugh
AU - Hounsome, Luke
AU - Donnelly, Conan
AU - Selby, Peter
AU - Kind, Paul
AU - Cross, William
AU - Catto, James W.H.
AU - Huws, Dyfed
AU - Brewster, David H.
AU - Mcnair, Emma
AU - Matheson, Lauren
AU - Rivas, Carol
AU - Nayoan, Johana
AU - Horton, Mike
AU - Corner, Jessica
AU - Verne, Julia
AU - Gavin, Anna
AU - Glaser, Adam W.
N1 - Publisher Copyright:
© Published by the BMJ Publishing Group Limited.
PY - 2016/12/1
Y1 - 2016/12/1
N2 - Background 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. Methods and analysis Postal surveys will be sent to prostate cancer survivors (18-42months postdiagnosis) in all 4 UK countries (n=∼70000). Eligible men will be identified and/or verified through cancer registration systems. Men will be surveyed twice, 12months 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). Ethics and dissemination 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.
AB - Background 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. Methods and analysis Postal surveys will be sent to prostate cancer survivors (18-42months postdiagnosis) in all 4 UK countries (n=∼70000). Eligible men will be identified and/or verified through cancer registration systems. Men will be surveyed twice, 12months 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). Ethics and dissemination 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.
KW - QUALITATIVE RESEARCH
UR - https://www.scopus.com/pages/publications/85006041969
U2 - 10.1136/bmjopen-2016-013555
DO - 10.1136/bmjopen-2016-013555
M3 - Article
C2 - 27927667
AN - SCOPUS:85006041969
SN - 2044-6055
VL - 6
JO - BMJ Open
JF - BMJ Open
IS - 12
M1 - e013555
ER -
