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BMC Medical Research Methodology
Published in: BMC Medical Research Methodology 1/2011

Open Access 01-12-2011 | Research article

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

Authors: Tara Clinton-McHarg, Mariko Carey, Rob Sanson-Fisher, Elizabeth Tracey

Published in: BMC Medical Research Methodology | Issue 1/2011

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Abstract

Background

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.

Methods

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.

Results

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.

Conclusions

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.
Appendix
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Metadata
Title
Recruitment of representative samples for low incidence cancer populations: Do registries deliver?
Authors
Tara Clinton-McHarg
Mariko Carey
Rob Sanson-Fisher
Elizabeth Tracey
Publication date
01-12-2011
Publisher
BioMed Central
Published in
BMC Medical Research Methodology / Issue 1/2011
Electronic ISSN: 1471-2288
DOI
https://doi.org/10.1186/1471-2288-11-5

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