Recruiting first-degree relatives for prevention research:a comparison of clinician and proband-led methods of contact in Crohn's disease

Reid, Erin P, Forbes, Alastair, Sanderson, Jeremy, Mathew, Christopher G, Lewis, Cathryn and Marteau, Theresa M (2006) Recruiting first-degree relatives for prevention research:a comparison of clinician and proband-led methods of contact in Crohn's disease. European Journal of Human Genetics, 14 (12). pp. 1263-8. ISSN 1018-4813

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Abstract

The most effective and acceptable ways of approaching relatives of identified probands to participate in research are unknown. We report on two methods. A total of 640 probands with Crohn's disease were contacted by post and invited to select how the research team would contact their relatives to assess their interest in participating in prevention research. Clinician-led approach: required probands to provide contact details for their first-degree relatives so that the research team could send them study questionnaires; proband-led approach: required probands to request questionnaires with stamped envelopes for them to forward to their relatives. Fifty-six percent (356/640) of probands contacted participated, with 80% (284) providing details of eligible relatives. Forty-eight percent (136/284) of probands requested 392 relatives be contacted by the researchers and 50% (142/284) requested that the questionnaire be sent to them so that they could give this to their 437 relatives personally. Two percent (6/284) requested mixed methods. Eligible responses came from 73% of relatives (587/805), 81% (299/368) of those contacted by the researchers and 66% (288/437) of those contacted via probands (difference 15%, 95% CI 10, 22). Both methods yielded similarly high levels of interest from relatives in participating in prevention research (89% (265/299) direct; 86% (248/288) indirect). Direct clinician-led contact maximised response rates. High levels of interest in research across the two recruitment methods suggest that although proband-led methods may maximise privacy, they may deny relatives the opportunity to take part in research that would be of interest.

Item Type: Article
Uncontrolled Keywords: adult,crohn disease,dna mutational analysis,female,genetic counseling,genetic predisposition to disease,heterozygote,humans,male,medical record linkage,middle aged,patient selection,questionnaires
Faculty \ School: Faculty of Medicine and Health Sciences > Norwich Medical School
University of East Anglia > Faculty of Medicine and Health Sciences > Research Groups > Gastroenterology and Gut Biology
University of East Anglia > Faculty of Medicine and Health Sciences > Research Groups > Nutrition
Depositing User: Pure Connector
Date Deposited: 06 Aug 2014 11:56
Last Modified: 23 Aug 2018 14:31
URI: https://ueaeprints.uea.ac.uk/id/eprint/49670
DOI: 10.1038/sj.ejhg.5201699

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