Psychological stress associated with cardiogenetic conditions

Nadia Hidayatallah, Louise B. Silverstein, Marina Stolerman, Thomas McDonald, Christine A. Walsh, Esma Paljevic, Lilian L. Cohen, Robert W. Marion, David Wasserman, Sarah Hreyo, Siobhan M. Dolan

Research output: Contribution to journalArticle

10 Citations (Scopus)

Abstract

Aim: Genetic testing now makes it possible to identify specific mutations that may lead to life-threatening cardiac arrhythmias. This article presents data from a qualitative research study that explored the subjective experiences of individuals and families with cardiogenetic conditions. We focus on describing patients' experiences of psychological stresses associated with having a cardiogenetic condition, illustrating the importance of integrating psychological and medical care. This integration of care is particularly important as personalized genomic medicine continues to evolve and the implications of genetic testing have a profound effect on individuals and families. Methods: The researchers interviewed 50 participants from 32 families. The research team used a systematic, grounded theory procedure to code and analyze interview and focus group transcripts, incorporating multiple coders at several stages of the data analysis process. Results: Three major themes emerged: a bereavement trajectory associated with sudden death in the absence of prior symptoms; high anxiety about transmitting a genetic mutation; and resilience reflected in positive lifestyle changes and participation in support groups. Conclusion: This article identifies patient perspectives on personalized genomic medicine in cardiogenetics that can improve clinical care, including: specialized bereavement counseling; improving education about cardiogenetic conditions for medical professionals; parent guidelines for discussing cardiogenetic conditions with their children; information about support groups; and the routine inclusion of clinical psychologists in interdisciplinary treatment teams. Given recent advances in technology and decreasing costs, whole-genome sequencing is likely to become common practice in the near future. Therefore, these recommendations are likely to be relevant for other genetic conditions, as well as the entire field of personalized genomic medicine.

Original languageEnglish (US)
Pages (from-to)631-640
Number of pages10
JournalPersonalized Medicine
Volume11
Issue number7
DOIs
StatePublished - Sep 1 2014

Fingerprint

Precision Medicine
Psychological Stress
Bereavement
Self-Help Groups
Genetic Testing
Psychology
Mutation
Qualitative Research
Sudden Death
Focus Groups
Life Style
Counseling
Cardiac Arrhythmias
Anxiety
Research Personnel
Genome
Guidelines
Interviews
Technology
Education

Keywords

  • cardiogenetic conditions
  • genetic testing
  • interdisciplinary treatment
  • long QT syndrome
  • personalized genomic medicine
  • psychological stress and genetic testing
  • sudden death

ASJC Scopus subject areas

  • Molecular Medicine
  • Pharmacology
  • Medicine(all)

Cite this

Hidayatallah, N., Silverstein, L. B., Stolerman, M., McDonald, T., Walsh, C. A., Paljevic, E., ... Dolan, S. M. (2014). Psychological stress associated with cardiogenetic conditions. Personalized Medicine, 11(7), 631-640. https://doi.org/10.2217/pme.14.50

Psychological stress associated with cardiogenetic conditions. / Hidayatallah, Nadia; Silverstein, Louise B.; Stolerman, Marina; McDonald, Thomas; Walsh, Christine A.; Paljevic, Esma; Cohen, Lilian L.; Marion, Robert W.; Wasserman, David; Hreyo, Sarah; Dolan, Siobhan M.

In: Personalized Medicine, Vol. 11, No. 7, 01.09.2014, p. 631-640.

Research output: Contribution to journalArticle

Hidayatallah, N, Silverstein, LB, Stolerman, M, McDonald, T, Walsh, CA, Paljevic, E, Cohen, LL, Marion, RW, Wasserman, D, Hreyo, S & Dolan, SM 2014, 'Psychological stress associated with cardiogenetic conditions', Personalized Medicine, vol. 11, no. 7, pp. 631-640. https://doi.org/10.2217/pme.14.50
Hidayatallah N, Silverstein LB, Stolerman M, McDonald T, Walsh CA, Paljevic E et al. Psychological stress associated with cardiogenetic conditions. Personalized Medicine. 2014 Sep 1;11(7):631-640. https://doi.org/10.2217/pme.14.50
Hidayatallah, Nadia ; Silverstein, Louise B. ; Stolerman, Marina ; McDonald, Thomas ; Walsh, Christine A. ; Paljevic, Esma ; Cohen, Lilian L. ; Marion, Robert W. ; Wasserman, David ; Hreyo, Sarah ; Dolan, Siobhan M. / Psychological stress associated with cardiogenetic conditions. In: Personalized Medicine. 2014 ; Vol. 11, No. 7. pp. 631-640.
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