The University of Southampton
University of Southampton Institutional Repository

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

Life after prostate cancer diagnosis: protocol for a UK-wide patient-reported outcomes study
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 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.
1-17
Downing, Amy
f4ff289d-68c6-466b-bbc4-f920e10506b5
Wright, Penny
be58e744-69be-48f8-a416-8e543af1ad7b
Wagland, Richard
16a44dcc-29cd-4797-9af2-41ef87f64d08
Watson, Eila
d295228d-d534-4c35-844f-ca8471c169c0
Kearney, Therese
d58c0ec6-0749-4782-a6be-08944e573008
Mottram, Rebecca
473ad2cf-3bfa-4f3c-881c-c48e170e8748
Allen, Majorie
8c4099d7-6913-4aa8-90ae-0fef4abbab4d
Cairnduff, Victoria
312f30b6-fc89-459c-bcb3-9b2f72532c72
MsSorley, Oonagh
462cd162-95f6-4d95-b3d1-ba41a488dd6a
Butcher, Hugh
ba20526e-5613-40e3-9659-df8d23c3bde3
Hounsome, Luke
07575bd0-d561-40fa-9680-5f5cdfb71508
Donnelly, Conan
f0325b8b-c0c7-419d-b9c9-a113c192457d
Selby, Peter
4d78c7d9-9d7a-4d92-acf0-597c4168d757
Kind, Paul
26be0eaa-3110-480a-9d34-979915a0ec7d
Cross, William
5fba4a57-8d96-44c2-95bf-260ba8a8d45a
Catto, James
974045b3-8c1e-4b46-920c-6efa4e02ac85
Huws, Dyfed
76a03af6-bae1-4ade-9a56-8601130148d3
Brewster, David
8e36cf51-73d2-4adf-97f2-4d130ed1a17e
McNair, Emma
853a7010-7936-4f32-b439-486bd9668751
Matheson, Lauren
4e548e54-983a-4c9e-ae99-22423ffeb69c
Rivas, Carol
040bfbc1-0aef-4826-ab58-e85743fea9d4
Nayoan, Johana
458079ad-4bf0-4053-97e9-77e34a3fe077
Horton, Mike
09137266-1e14-4b21-b856-aad492562c46
Corner, Jessica
eddc9d69-aa12-4de5-8ab0-b20a6b5765fa
Verne, Julia
46bddbb7-44f2-4928-a2a6-b6fbefd8b14a
Gavin, Anna
e887a323-7787-4455-82f7-531198db885d
Glaser, Adam
47f40b4c-2ff7-4c0e-a137-67564d0c29bc
Downing, Amy
f4ff289d-68c6-466b-bbc4-f920e10506b5
Wright, Penny
be58e744-69be-48f8-a416-8e543af1ad7b
Wagland, Richard
16a44dcc-29cd-4797-9af2-41ef87f64d08
Watson, Eila
d295228d-d534-4c35-844f-ca8471c169c0
Kearney, Therese
d58c0ec6-0749-4782-a6be-08944e573008
Mottram, Rebecca
473ad2cf-3bfa-4f3c-881c-c48e170e8748
Allen, Majorie
8c4099d7-6913-4aa8-90ae-0fef4abbab4d
Cairnduff, Victoria
312f30b6-fc89-459c-bcb3-9b2f72532c72
MsSorley, Oonagh
462cd162-95f6-4d95-b3d1-ba41a488dd6a
Butcher, Hugh
ba20526e-5613-40e3-9659-df8d23c3bde3
Hounsome, Luke
07575bd0-d561-40fa-9680-5f5cdfb71508
Donnelly, Conan
f0325b8b-c0c7-419d-b9c9-a113c192457d
Selby, Peter
4d78c7d9-9d7a-4d92-acf0-597c4168d757
Kind, Paul
26be0eaa-3110-480a-9d34-979915a0ec7d
Cross, William
5fba4a57-8d96-44c2-95bf-260ba8a8d45a
Catto, James
974045b3-8c1e-4b46-920c-6efa4e02ac85
Huws, Dyfed
76a03af6-bae1-4ade-9a56-8601130148d3
Brewster, David
8e36cf51-73d2-4adf-97f2-4d130ed1a17e
McNair, Emma
853a7010-7936-4f32-b439-486bd9668751
Matheson, Lauren
4e548e54-983a-4c9e-ae99-22423ffeb69c
Rivas, Carol
040bfbc1-0aef-4826-ab58-e85743fea9d4
Nayoan, Johana
458079ad-4bf0-4053-97e9-77e34a3fe077
Horton, Mike
09137266-1e14-4b21-b856-aad492562c46
Corner, Jessica
eddc9d69-aa12-4de5-8ab0-b20a6b5765fa
Verne, Julia
46bddbb7-44f2-4928-a2a6-b6fbefd8b14a
Gavin, Anna
e887a323-7787-4455-82f7-531198db885d
Glaser, Adam
47f40b4c-2ff7-4c0e-a137-67564d0c29bc

Downing, Amy, Wright, Penny, Wagland, Richard, Watson, Eila, Kearney, Therese, Mottram, Rebecca, Allen, Majorie, Cairnduff, Victoria, MsSorley, Oonagh, Butcher, Hugh, Hounsome, Luke, Donnelly, Conan, Selby, Peter, Kind, Paul, Cross, William, Catto, James, Huws, Dyfed, Brewster, David, McNair, Emma, Matheson, Lauren, Rivas, Carol, Nayoan, Johana, Horton, Mike, Corner, Jessica, Verne, Julia, Gavin, Anna and Glaser, Adam (2016) Life after prostate cancer diagnosis: protocol for a UK-wide patient-reported outcomes study. BMJ Open, 6 (12), 1-17. (doi:10.1136/bmjopen-2016-013555).

Record type: Article

Abstract

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.

Text
Life After Prostate Cancer Diagnosis Protocol for a UK-wide.pdf - Accepted Manuscript
Available under License Creative Commons Attribution.
Download (2MB)
Text
BMJOpen_LAPCD Protocol paper.pdf - Version of Record
Download (3MB)

More information

Accepted/In Press date: 3 November 2016
e-pub ahead of print date: 7 December 2016
Published date: 7 December 2016
Organisations: Faculty of Health Sciences

Identifiers

Local EPrints ID: 402423
URI: http://eprints.soton.ac.uk/id/eprint/402423
PURE UUID: 8b2d5bfe-b445-4c6e-9632-59903aaba022
ORCID for Richard Wagland: ORCID iD orcid.org/0000-0003-1825-7587

Catalogue record

Date deposited: 09 Nov 2016 09:17
Last modified: 15 Mar 2024 03:35

Export record

Altmetrics

Contributors

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

Download statistics

Downloads from ePrints over the past year. Other digital versions may also be available to download e.g. from the publisher's website.

View more statistics

Atom RSS 1.0 RSS 2.0

Contact ePrints Soton: eprints@soton.ac.uk

ePrints Soton supports OAI 2.0 with a base URL of http://eprints.soton.ac.uk/cgi/oai2

This repository has been built using EPrints software, developed at the University of Southampton, but available to everyone to use.

We use cookies to ensure that we give you the best experience on our website. If you continue without changing your settings, we will assume that you are happy to receive cookies on the University of Southampton website.

×