title: Life after prostate cancer diagnosis: protocol for a UK-wide patient-reported outcomes study.
abstract: 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.
authors.affiliation: Leeds Institute of Cancer and Pathology, St James's University Hospital, Leeds, UK.
authors.forename: Amy
authors.initials: A
authors.lastname: Downing
authors.affiliation: Leeds Institute of Cancer and Pathology, St James's University Hospital, Leeds, UK.
authors.forename: Penny
authors.initials: P
authors.lastname: Wright
authors.affiliation: Faculty of Health Sciences, University of Southampton, Southampton, UK.
authors.forename: Richard
authors.initials: R
authors.lastname: Wagland
authors.affiliation: Faculty of Health and Life Sciences, Department of Applied Health and Professional Development, Oxford Brookes University, Oxford, UK.
authors.forename: Eila
authors.initials: E
authors.lastname: Watson
authors.affiliation: Northern Ireland Cancer Registry, Queens University Belfast, Royal Victoria Hospital, Belfast, UK.
authors.forename: Therese
authors.initials: T
authors.lastname: Kearney
authors.affiliation: Leeds Institute of Cancer and Pathology, St James's University Hospital, Leeds, UK.
authors.forename: Rebecca
authors.initials: R
authors.lastname: Mottram
authors.affiliation: Leeds Institute of Cancer and Pathology, St James's University Hospital, Leeds, UK.
authors.forename: Majorie
authors.initials: M
authors.lastname: Allen
authors.affiliation: Northern Ireland Cancer Registry, Queens University Belfast, Royal Victoria Hospital, Belfast, UK.
authors.forename: Victoria
authors.initials: V
authors.lastname: Cairnduff
authors.affiliation: Northern Ireland Cancer Registry, Queens University Belfast, Royal Victoria Hospital, Belfast, UK.
authors.forename: Oonagh
authors.initials: O
authors.lastname: McSorley
authors.affiliation: Leeds Institute of Cancer and Pathology, St James's University Hospital, Leeds, UK.|Yorkshire Cancer Patient Forum, c/o Strategic Clinical Network and Senate, Yorkshire and The Humber, Harrogate, UK.
authors.forename: Hugh
authors.initials: H
authors.lastname: Butcher
authors.affiliation: National Cancer Registration and Analysis Service, Public Health England, Bristol, UK.
authors.forename: Luke
authors.initials: L
authors.lastname: Hounsome
authors.affiliation: Northern Ireland Cancer Registry, Queens University Belfast, Royal Victoria Hospital, Belfast, UK.
authors.forename: Conan
authors.initials: C
authors.lastname: Donnelly
authors.affiliation: Leeds Institute of Cancer and Pathology, St James's University Hospital, Leeds, UK.
authors.forename: Peter
authors.initials: P
authors.lastname: Selby
authors.affiliation: Academic Unit of Health Economics, Institute of Health Sciences, University of Leeds, Leeds, UK.
authors.forename: Paul
authors.initials: P
authors.lastname: Kind
authors.affiliation: Leeds Teaching Hospitals NHS Trust, St James's University Hospital, Leeds, UK.
authors.forename: William
authors.initials: W
authors.lastname: Cross
authors.affiliation: Academic Urology Unit, University of Sheffield, Medical School, Sheffield, UK.
authors.forename: James W H
authors.initials: JW
authors.lastname: Catto
authors.affiliation: Welsh Cancer Intelligence and Surveillance Unit, Cardiff, UK.
authors.forename: Dyfed
authors.initials: D
authors.lastname: Huws
authors.affiliation: Public Health and Intelligence (NHS National Services Scotland), Edinburgh, UK.
authors.forename: David H
authors.initials: DH
authors.lastname: Brewster
authors.affiliation: Public Health and Intelligence (NHS National Services Scotland), Edinburgh, UK.
authors.forename: Emma
authors.initials: E
authors.lastname: McNair
authors.affiliation: Faculty of Health and Life Sciences, Department of Applied Health and Professional Development, Oxford Brookes University, Oxford, UK.
authors.forename: Lauren
authors.initials: L
authors.lastname: Matheson
authors.affiliation: Faculty of Health Sciences, University of Southampton, Southampton, UK.
authors.forename: Carol
authors.initials: C
authors.lastname: Rivas
authors.affiliation: Faculty of Health Sciences, University of Southampton, Southampton, UK.
authors.forename: Johana
authors.initials: J
authors.lastname: Nayoan
authors.affiliation: Leeds Institute of Cancer and Pathology, St James's University Hospital, Leeds, UK.
authors.forename: Mike
authors.initials: M
authors.lastname: Horton
authors.affiliation: Faculty of Health Sciences, University of Southampton, Southampton, UK.
authors.forename: Jessica
authors.initials: J
authors.lastname: Corner
authors.affiliation: Knowledge and Intelligence Directorate, Public Health England, Bristol, UK.
authors.forename: Julia
authors.initials: J
authors.lastname: Verne
authors.affiliation: Northern Ireland Cancer Registry, Queens University Belfast, Royal Victoria Hospital, Belfast, UK.
authors.forename: Anna
authors.initials: A
authors.lastname: Gavin
authors.affiliation: Leeds Institute of Cancer and Pathology, St James's University Hospital, Leeds, UK.
authors.forename: Adam W
authors.initials: AW
authors.lastname: Glaser
mesh_terms: D000223:Adaptation, Psychological; D002985:Clinical Protocols; D006801:Humans; D008016:Life Change Events; D008297:Male; D000071066:Patient Reported Outcome Measures; D011050:Policy Making; D011471:Prostatic Neoplasms / Q000523:psychology* / Q000628:therapy; D011594:Psychometrics; D011788:Quality of Life; D018454:Spouses / Q000523:psychology*; D013222:State Medicine; D017741:Survivors / Q000523:psychology*; D006113:United Kingdom / Q000453:epidemiology
keywords: QUALITATIVE RESEARCH