Date of Award

2017

Document Type

Open Access Thesis

Department

Genetic Counseling

Sub-Department

School of Medicine

First Advisor

Peggy Walker

Abstract

Sudden arrhythmic death syndrome (SADS) is due to genetic conditions associated with cardiac ion channelopathies and cardiomyopathies. Many of these conditions have exercise guidelines regarding eligibility and disqualification recommendations for competitive athletes through the American Heart Association and the American College for Cardiology. This study investigates how medical professionals communicate these exercise recommendations to patients, and in turn, how well patients understand these recommendations. The study also explores motivations for either continuing or discontinuing an exercise practice after a diagnosis. A questionnaire was distributed through cardiac disease-focused support groups and organizations. Data from 67 individuals with a SADS condition were analyzed for possible associations and significant differences. Results demonstrated that intensity of exercise on a 1 to 9 scale decreased from 4.9 to 3.3 after a diagnosis (p < .01). Time spent exercising decreased from 204 minutes per week to 142 min/week after a diagnosis (p < .01). Patients were significantly more likely to decrease activity intensity when they felt confident with the communication of their exercise recommendations and how well they understood them. This study showed that individuals felt poorly informed regarding their exercise recommendations and often take on heavy emotional burdens due to restrictive guidelines. The respondents widely expressed that quality of life is an important factor in their decisions about exercise, and that continuing exercise is a major component of a

healthy lifestyle despite risks associated with SADS. Involving genetic counselors in the discussion of exercise guidelines is recommended while addressing the psychosocial outcomes of a recent diagnosis. This addition to the management of individuals with a SADS diagnosis is likely to increase awareness of how exercise recommendations are managed and how well patients understand that their personalized exercise plan will promote a safer healthcare management plan for each patient.

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