A pilot study to assess the feasibility of a multicenter cluster randomized trial for the management of asymptomatic persons with a thrombophilia

Philip S. Wells, Martha L. Louzada, Monica Taljaard, David R. Anderson, Susan R. Kahn, Nicole J. Langlois, Julie Rutberg, Michael J. Kovacs, Marc A. Rodger

Research output: Contribution to journalArticlepeer-review

5 Citations (Scopus)

Abstract

There is controversy whether asymptomatic first-degree relatives (FDRs) of patients with venous thromboembolism (VTE) and thrombophilia should be screened, followed, and prescribed prophylaxis during risk periods. We recruited consecutive probands with idiopathic VTE and thrombophilia from our thrombosis clinics. Those FDRs with thrombophilia were randomized in family clusters to receive one-time verbal counseling and no organized follow-up or counseling, educational material, reminder aids and follow-up. Only 203 of 1,129 FDRs were eligible and consented. Dropouts were common; 1 FDR (1.7%) developed VTE. VTE risk, ability to treat and prevent were underestimated by the participants. Patients with VTE and thrombophilia and their FDRs are often not interested in thrombophilia testing. Despite education to inform their knowledge, interest and follow-up were less than ideal. The question of the best educational approach in these patients remains unanswered. The value of testing and following asymptomatic carriers of probands with VTE and thrombophilia remains unknown.

Original languageEnglish
Pages (from-to)475-482
Number of pages8
JournalJournal of Genetic Counseling
Volume18
Issue number5
DOIs
Publication statusPublished - Oct 2009

Bibliographical note

Funding Information:
Dr. Kahn is the recipient of a Senior Clinical Investigator Award from the Fonds de recherche en santé du Québec.

Funding Information:
Dr. Marc Rodger is the recipient of a Career Scientist Award from the Heart and Stroke Foundation of Ontario.

Funding Information:
Acknowledgements This study was funded by an operating grant from the Canadian Institutes of Health Research (MCT 58454) and by a Heart and Stroke Foundation of Ontario Program Grant (PRG 5513).

ASJC Scopus Subject Areas

  • Genetics(clinical)

PubMed: MeSH publication types

  • Journal Article
  • Multicenter Study
  • Randomized Controlled Trial
  • Research Support, Non-U.S. Gov't

Fingerprint

Dive into the research topics of 'A pilot study to assess the feasibility of a multicenter cluster randomized trial for the management of asymptomatic persons with a thrombophilia'. Together they form a unique fingerprint.

Cite this

Wells, P. S., Louzada, M. L., Taljaard, M., Anderson, D. R., Kahn, S. R., Langlois, N. J., Rutberg, J., Kovacs, M. J., & Rodger, M. A. (2009). A pilot study to assess the feasibility of a multicenter cluster randomized trial for the management of asymptomatic persons with a thrombophilia. Journal of Genetic Counseling, 18(5), 475-482. https://doi.org/10.1007/s10897-009-9239-7