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Family Communication in a Population at Risk for Hypertrophic Cardiomyopathy

  • Original Research
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Journal of Genetic Counseling

Abstract

Encouraging family communication is an integral component of genetic counseling; therefore, we sought to identify factors impacting communication to family members at risk for Hypertrophic Cardiomyopathy (HCM). Participants (N = 383) completed an online survey assessing: 1) demographics (gender, genetic test results, HCM family history, and disease severity); 2) illness representations; 3) family functioning and cohesiveness; 4) coping styles; 5) comprehension of HCM autosomal dominant inheritance; and 6) communication of HCM risk information to at-risk relatives. Participants were a national sample of individuals with HCM, recruited through the Hypertrophic Cardiomyopathy Association. Data from 183 participants were analyzed using a logistic regression analysis, with family communication as a dichotomous dependent variable. We found that female gender and higher comprehension of autosomal dominant inheritance were significant predictors of participants’ communication of HCM risk information to all their siblings and children. Our results suggest that utilizing interventions that promote patient comprehension (e.g., a teaching-focused model of genetic counseling) are important and may positively impact family communication within families with HCM.

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Acknowledgments

This work has been supported by the Jane Engelberg Memorial Fellowship Student Research Award, provided by the Engelberg Foundation to the NSGC, and the University of Michigan Rackham Graduate Student Research Grant.

We thank Laura Klem and Kathy Welch for all their assistance with statistical analyses.

Conflict of Interest

Brittany Batte, Jane P. Sheldon, Patricia Arscott, Darcy J. Huismann, Lisa Salberg, Sharlene M. Day, and Beverly M. Yashar declare that they have no conflict of interest.

Human Studies and Informed Consent

All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000. Informed consent was obtained from all patients for being included in the study.

Animal Studies

No animal studies were carried out by the authors for this article.

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Authors and Affiliations

  1. Department of Human Genetics, University of Michigan, Ann Arbor, MI, USA

    Brittany Batte & Beverly M. Yashar

  2. Department of Behavioral Sciences, University of Michigan-Dearborn, Dearborn, MI, USA

    Jane P. Sheldon

  3. Department of Internal Medicine, University of Michigan, Ann Arbor, MI, USA

    Patricia Arscott & Sharlene M. Day

  4. Adult Genetics Clinic, University of Colorado Hospital, Aurora, CO, USA

    Darcy J. Huismann

  5. Hypertrophic Cardiomyopathy Association, Hibernia, NJ, USA

    Lisa Salberg

  6. Department of Gynecologic Oncology, Unit 1362, PO Box 301439, Houston, TX, 77230, USA

    Brittany Batte

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  1. Brittany Batte
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Correspondence to Brittany Batte.

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Batte, B., Sheldon, J.P., Arscott, P. et al. Family Communication in a Population at Risk for Hypertrophic Cardiomyopathy. J Genet Counsel 24, 336–348 (2015). https://doi.org/10.1007/s10897-014-9774-8

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