CHARACTERIZING DECISION-MAKING SURROUNDING EXERCISE IN ARVC: ANALYSIS OF DECISIONAL CONFLICT, DECISIONAL REGRET, AND SHARED DECISION-MAKING

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dc.contributor.advisorJames, Cindy A
dc.contributor.advisorJamal, Leila
dc.contributor.committeeMemberRoter, Debra
dc.contributor.committeeMemberChristian, Susan
dc.creatorSweeney, Jessica M
dc.date.accessioned2023-02-10T21:28:13Z
dc.date.available2023-02-10T21:28:13Z
dc.date.created2022-12
dc.date.issued2022-12-13
dc.date.submittedDecember 2022
dc.date.updated2023-02-10T21:28:13Z
dc.description.abstractBackground: Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC) is a genetic condition that predisposes individuals to arrythmia, cardiomyopathy, and sudden cardiac death (SCD). Because of associated risk, it is recommended that those diagnosed with or at-risk for ARVC restrict exercise. Guidelines recommend shared decision making (SDM), but there has been little exploration as to whether SDM is happening or its impact on exercise decision-making. Objectives: To 1) describe the extent to which SDM is happening in the population, 2) characterize for whom SDM is happening more or less in the population, and 3) determine if shared decision-making is associated with decisional conflict, decisional regret, and adherence. Methods: Adults diagnosed with ARVC or who have tested positive for genetic ARVC-risk enrolled in the Johns Hopkins ARVC Registry were invited to complete a one-time questionnaire that included exercise history, athlete identity, SDM (SDM-Q-9), decisional conflict (DCS), and decisional regret (DRS). Results: 205/316 invited to the study participated (response rate = 64.8%). 68.0% (n=121) reported clinically significant decisional conflict regarding exercise at the time of ARVC diagnosis or GT (DCS≥25), while 55.1% (n=98) reported clinically significant decisional conflict in the year prior to study completion. Prevalence of decisional regret was also high, with 55.3% (n=99) of participants experiencing moderate to severe decisional regret (DRS≥25). Decisional conflict scores at the time of diagnosis or GT were linearly associated with SDM-Q-9 scores (ß= -.66 R2=0.567, p<0.01). Those diagnosed at 21 or younger reported significantly more SDM (12.8±5.1, p=0.013) and less decisional conflict (-10.1±4.5, p=0.03) than those diagnosed later. ii Discussion: SDM is associated with decreased decisional conflict and decisional regret and is not associated with adherence. This indicates that SDM may be the preferred model of exercise decision-making for those with ARVC and contributes to the literature suggesting that SDM is effective model of decision-making in genetic counseling.
dc.format.mimetypeapplication/pdf
dc.identifier.urihttp://jhir.library.jhu.edu/handle/1774.2/68059
dc.language.isoen_US
dc.publisherJohns Hopkins University
dc.publisher.countryUSA
dc.subjectArrhythmogenic right ventricular cardiomyopathy, genetics, exercise, shared decision-making, decisional conflict, decisional regret
dc.titleCHARACTERIZING DECISION-MAKING SURROUNDING EXERCISE IN ARVC: ANALYSIS OF DECISIONAL CONFLICT, DECISIONAL REGRET, AND SHARED DECISION-MAKING
dc.typeThesis
dc.type.materialtext
thesis.degree.departmentHealth, Behavior and Society
thesis.degree.disciplineGenetic Counseling
thesis.degree.grantorJohns Hopkins University
thesis.degree.grantorBloomberg School of Public Health
thesis.degree.levelMasters
thesis.degree.nameSc.M.
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