Key result
Stronger genetic counselor-patient relationships are linked to increased patient empowerment in arrhythmogenic cardiomyopathy.
Why the study?
Data describing patient outcomes to guide evidence-based care in cardiovascular genetic counseling are scant, and no studies had quantified the influence of the genetic counselor:patient relationship on outcomes.
Does genetic counseling improve empowerment in patients with arrhythmogenic cardiomyopathy?
Observational (n=120)
No
Does genetic counseling improve empowerment in patients with arrhythmogenic cardiomyopathy?
Effect estimate: B 0.80 (95% CI 0.43-1.17)
p-value: p=<.001
Genetic counseling significantly increases empowerment in patients with arrhythmogenic cardiomyopathy, and this improvement is strongly associated with the quality of the genetic counselor-patient relationship rather than the ordering of genetic tests.
May support emphasizing rapport in arrhythmogenic cardiomyopathy counseling; hypothesis-generating and requires prospective trials before practice change.
Genetic testing and genetic counseling (GC) are increasingly recommended in the cardiovascular setting, with multiple guidelines recommending GC for patients with or at risk for inherited cardiovascular conditions. There are scant data, however, describing patient outcomes to guide evidence-based care. No studies have quantified the influence of the strength of the genetic counselor:patient relationship on outcomes. Individuals referred for first time GC at the Johns Hopkins Arrhythmogenic Cardiomyopathy (ACM) center were surveyed prior to their visit and immediately after, before any genetic test results ordered at the session had been returned. Outcomes and measures were selected based on the Reciprocal Engagement Model of GC and include empowerment assessed by the Genetic Counseling Outcome Scale (GCOS), anxiety assessed by the Cardiac Anxiety Questionnaire (CAQ), and genetic counselor:patient therapeutic alliance assessed by the Working Alliance Inventory (WAI-SR). Response rate was 59% (120/203). 54 (45%) of patients had genetic testing ordered prior to their GC visit. There was a significant increase in GCOS score (mean 15.7 points) within 4 weeks post-GC session (p<.0001) with no significant difference in GCOS change between patients who had genetic testing ordered previously and those attending pre-test counseling (17.4 ± 18.2 versus. 14.1 ± 16 [p=.35]). Average CAQ score was high at baseline (1.67 ± 0.68), and there was a significant inverse relationship between pre-GC CAQ score and extent of increase in GCOS score (p=.008) post-GC. Controlling for baseline anxiety, there was a strong positive relationship between the WAI-SR score and GCOS change (B = 0.80, 95% CI: 0.43, 1.17, p<.001). These results demonstrate a significant increase in empowerment after GC in ACM patients and that this outcome is not reliant on the ordering of a genetic test but instead sensitive to the quality of the genetic counselor:patient relationship. Genetic counselors can strive to further improve empowerment by focusing on reducing pre-visit anxiety and alliance building with the patient.
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Murray et al. (2021) conducted an observational in Arrhythmogenic Cardiomyopathy (n=120). Strength of genetic counselor-patient relationship was evaluated on Change in empowerment assessed by the Genetic Counseling Outcome Scale (GCOS) (B 0.80, 95% CI 0.43-1.17, p=<.001). A stronger genetic counselor-patient relationship was associated with increased patient empowerment after genetic counseling for arrhythmogenic cardiomyopathy (B=0.80; 95% CI 0.43-1.17; P<0.001).
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