Life after prostate cancer diagnosis: protocol for a UK-wide patient-reported outcomes study
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 in...
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| Format: | Article |
| Language: | English |
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BMJ Publishing Group
2016-12-01
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| Series: | BMJ Open |
| Online Access: | https://bmjopen.bmj.com/content/6/12/e013555.full |
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| author | David H Brewster Victoria Cairnduff Eila Watson Amy Downing Adam W Glaser Penny Wright William Cross Conan Donnelly Anna Gavin Carol Rivas Richard Wagland Peter Selby Luke Hounsome Therese Kearney Rebecca Mottram Majorie Allen Oonagh McSorley Hugh Butcher Paul Kind James W H Catto Dyfed Huws Emma McNair Lauren Matheson Johana Nayoan Mike Horton Jessica Corner Julia Verne |
| author_facet | David H Brewster Victoria Cairnduff Eila Watson Amy Downing Adam W Glaser Penny Wright William Cross Conan Donnelly Anna Gavin Carol Rivas Richard Wagland Peter Selby Luke Hounsome Therese Kearney Rebecca Mottram Majorie Allen Oonagh McSorley Hugh Butcher Paul Kind James W H Catto Dyfed Huws Emma McNair Lauren Matheson Johana Nayoan Mike Horton Jessica Corner Julia Verne |
| author_sort | David H Brewster |
| collection | DOAJ |
| description | 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 (18–42 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).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. |
| format | Article |
| id | doaj-art-83fb16a1ba6e485ebc8c52d076a17840 |
| institution | Kabale University |
| issn | 2044-6055 |
| language | English |
| publishDate | 2016-12-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Open |
| spelling | doaj-art-83fb16a1ba6e485ebc8c52d076a178402025-02-09T01:05:11ZengBMJ Publishing GroupBMJ Open2044-60552016-12-0161210.1136/bmjopen-2016-013555Life after prostate cancer diagnosis: protocol for a UK-wide patient-reported outcomes studyDavid H Brewster0Victoria Cairnduff1Eila Watson2Amy Downing3Adam W Glaser4Penny Wright5William Cross6Conan Donnelly7Anna Gavin8Carol Rivas9Richard Wagland10Peter Selby11Luke Hounsome12Therese Kearney13Rebecca Mottram14Majorie Allen15Oonagh McSorley16Hugh Butcher17Paul Kind18James W H Catto19Dyfed Huws20Emma McNair21Lauren Matheson22Johana Nayoan23Mike Horton24Jessica Corner25Julia Verne267 Centre for Population Health Sciences, Edinburgh University, Edinburgh, UK1Centre for Public Health, Queen’s University Belfast, Belfast, UKClinical Health Care, Oxford Brookes University, Oxford, UKPathology and Data Analytics, Leeds Institute of Medical Research, University of Leeds, Leeds, UK1 Leeds Institute for Data Analytics (LIDA), University of Leeds, Leeds, UKSchool of Medicine, University of Leeds, Leeds, UK8Leeds Teaching Hospitals NHS Trust, St James`s University Hospital, Leeds, UKNational Cancer Registry, Cork, IrelandN Ireland Cancer Registry, Queen`s University Belfast, Belfast, UKSocial Research Institute, University College London, London, UKFaculty of Health Sciences, University of Southampton, Southampton, UKChair of the PinPoint Scientific Advisory Board, Leeds, UK1 National Disease Registration Service, Public Health England, London, UK4Northern Ireland Cancer Registry, Queens University Belfast, Royal Victoria Hospital, Belfast, UK1University Of Leeds1Leeds Institute of Cancer and Pathology, St James`s University Hospital, Leeds, UK4Northern Ireland Cancer Registry, Queens University Belfast, Royal Victoria Hospital, Belfast, UK5Yorkshire Cancer Patient Forum, c/o Strategic Clinical Network and Senate, Yorkshire and The Humber, Harrogate, UK7Academic Unit of Health Economics, Institute of Health Sciences, University of Leeds, Leeds, UK9Academic Urology Unit, University of Sheffield, Medical School, Sheffield, UKPublic Health Wales, Welsh Cancer Intelligence & Surveillance Unit, Cardiff, Wales, UK11Public Health and Intelligence (NHS National Services Scotland), Edinburgh, UK3Faculty of Health and Life Sciences, Department of Applied Health and Professional Development, Oxford Brookes University, Oxford, UK2Faculty of Health Sciences, University of Southampton, Southampton, UKAcademic Department of Rehabilitation Medicine, University of Leeds, Leeds, UKFaculty of Health Sciences, University of Southampton, Southampton, UKDepartment of Palliative Care, Policy and Rehabilitation, Cicely Saunders Institute, King`s College London, London, UKBackground 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 (18–42 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).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.https://bmjopen.bmj.com/content/6/12/e013555.full |
| spellingShingle | David H Brewster Victoria Cairnduff Eila Watson Amy Downing Adam W Glaser Penny Wright William Cross Conan Donnelly Anna Gavin Carol Rivas Richard Wagland Peter Selby Luke Hounsome Therese Kearney Rebecca Mottram Majorie Allen Oonagh McSorley Hugh Butcher Paul Kind James W H Catto Dyfed Huws Emma McNair Lauren Matheson Johana Nayoan Mike Horton Jessica Corner Julia Verne Life after prostate cancer diagnosis: protocol for a UK-wide patient-reported outcomes study BMJ Open |
| title | Life after prostate cancer diagnosis: protocol for a UK-wide patient-reported outcomes study |
| title_full | Life after prostate cancer diagnosis: protocol for a UK-wide patient-reported outcomes study |
| title_fullStr | Life after prostate cancer diagnosis: protocol for a UK-wide patient-reported outcomes study |
| title_full_unstemmed | Life after prostate cancer diagnosis: protocol for a UK-wide patient-reported outcomes study |
| title_short | Life after prostate cancer diagnosis: protocol for a UK-wide patient-reported outcomes study |
| title_sort | life after prostate cancer diagnosis protocol for a uk wide patient reported outcomes study |
| url | https://bmjopen.bmj.com/content/6/12/e013555.full |
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