Recruitment of representative samples for low incidence cancer populations: Do registries deliver?

<p>Abstract</p> <p>Background</p> <p>Recruiting large and representative samples of adolescent and young adult (AYA) cancer survivors is important for gaining accurate data regarding the prevalence of unmet needs in this population. This study aimed to describe recruitm...

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Main Authors: Sanson-Fisher Rob, Carey Mariko, Clinton-McHarg Tara, Tracey Elizabeth
Format: Article
Language:English
Published: BMC 2011-01-01
Series:BMC Medical Research Methodology
Online Access:http://www.biomedcentral.com/1471-2288/11/5
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spelling doaj-0110499c096e4bbbbfbc92159a41b8602020-11-24T23:31:19ZengBMCBMC Medical Research Methodology1471-22882011-01-01111510.1186/1471-2288-11-5Recruitment of representative samples for low incidence cancer populations: Do registries deliver?Sanson-Fisher RobCarey MarikoClinton-McHarg TaraTracey Elizabeth<p>Abstract</p> <p>Background</p> <p>Recruiting large and representative samples of adolescent and young adult (AYA) cancer survivors is important for gaining accurate data regarding the prevalence of unmet needs in this population. This study aimed to describe recruitment rates for AYAs recruited through a cancer registry with particular focus on: active clinician consent protocols, reasons for clinicians not providing consent and the representativeness of the final sample.</p> <p>Methods</p> <p>Adolescents and young adults aged 14 to19 years inclusive and listed on the cancer registry from January 1 2002 to December 31 2007 were identified. An active clinician consent protocol was used whereby the registry sent a letter to AYAs primary treating clinicians requesting permission to contact the survivors. The registry then sent survivors who received their clinician's consent a letter seeking permission to forward their contact details to the research team. Consenting AYAs were sent a questionnaire which assessed their unmet needs.</p> <p>Results</p> <p>The overall consent rate for AYAs identified as eligible by the registry was 7.8%. Of the 411 potentially eligible survivors identified, just over half (n = 232, 56%) received their clinician's consent to be contacted. Of those 232 AYAs, 65% were unable to be contacted. Only 18 AYAs (7.8%) refused permission for their contact details to be passed on to the research team. Of the 64 young people who agreed to be contacted, 50% (n = 32) completed the questionnaire.</p> <p>Conclusions</p> <p>Cancer registries which employ active clinician consent protocols may not be appropriate for recruiting large, representative samples of AYAs diagnosed with cancer. Given that AYA cancer survivors are highly mobile, alternative methods such as treatment centre and clinic based recruitment may need to be considered.</p> http://www.biomedcentral.com/1471-2288/11/5
collection DOAJ
language English
format Article
sources DOAJ
author Sanson-Fisher Rob
Carey Mariko
Clinton-McHarg Tara
Tracey Elizabeth
spellingShingle Sanson-Fisher Rob
Carey Mariko
Clinton-McHarg Tara
Tracey Elizabeth
Recruitment of representative samples for low incidence cancer populations: Do registries deliver?
BMC Medical Research Methodology
author_facet Sanson-Fisher Rob
Carey Mariko
Clinton-McHarg Tara
Tracey Elizabeth
author_sort Sanson-Fisher Rob
title Recruitment of representative samples for low incidence cancer populations: Do registries deliver?
title_short Recruitment of representative samples for low incidence cancer populations: Do registries deliver?
title_full Recruitment of representative samples for low incidence cancer populations: Do registries deliver?
title_fullStr Recruitment of representative samples for low incidence cancer populations: Do registries deliver?
title_full_unstemmed Recruitment of representative samples for low incidence cancer populations: Do registries deliver?
title_sort recruitment of representative samples for low incidence cancer populations: do registries deliver?
publisher BMC
series BMC Medical Research Methodology
issn 1471-2288
publishDate 2011-01-01
description <p>Abstract</p> <p>Background</p> <p>Recruiting large and representative samples of adolescent and young adult (AYA) cancer survivors is important for gaining accurate data regarding the prevalence of unmet needs in this population. This study aimed to describe recruitment rates for AYAs recruited through a cancer registry with particular focus on: active clinician consent protocols, reasons for clinicians not providing consent and the representativeness of the final sample.</p> <p>Methods</p> <p>Adolescents and young adults aged 14 to19 years inclusive and listed on the cancer registry from January 1 2002 to December 31 2007 were identified. An active clinician consent protocol was used whereby the registry sent a letter to AYAs primary treating clinicians requesting permission to contact the survivors. The registry then sent survivors who received their clinician's consent a letter seeking permission to forward their contact details to the research team. Consenting AYAs were sent a questionnaire which assessed their unmet needs.</p> <p>Results</p> <p>The overall consent rate for AYAs identified as eligible by the registry was 7.8%. Of the 411 potentially eligible survivors identified, just over half (n = 232, 56%) received their clinician's consent to be contacted. Of those 232 AYAs, 65% were unable to be contacted. Only 18 AYAs (7.8%) refused permission for their contact details to be passed on to the research team. Of the 64 young people who agreed to be contacted, 50% (n = 32) completed the questionnaire.</p> <p>Conclusions</p> <p>Cancer registries which employ active clinician consent protocols may not be appropriate for recruiting large, representative samples of AYAs diagnosed with cancer. Given that AYA cancer survivors are highly mobile, alternative methods such as treatment centre and clinic based recruitment may need to be considered.</p>
url http://www.biomedcentral.com/1471-2288/11/5
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AT clintonmchargtara recruitmentofrepresentativesamplesforlowincidencecancerpopulationsdoregistriesdeliver
AT traceyelizabeth recruitmentofrepresentativesamplesforlowincidencecancerpopulationsdoregistriesdeliver
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