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Patient and Clinician Perceptions of Precision Cardiology Care: Findings From the HeartCare Study
Hadley Stevens Smith1, Clarissa E Sanchez1, Ronald Maag2
1Center for Medical Ethics & Health Policy, Baylor College of Medicine, Houston, TX (H.S.S., C.E.S., A.L.M., S.P.).
Insights
Genetic testing for cardiovascular disease risk is perceived as beneficial by patients and clinicians. This routine screening informs clinical decisions and health behaviors without causing undue patient distress.
Area of Science:
- Genomics
- Cardiovascular Medicine
- Health Services Research
Background:
- Routine genome-wide screening for cardiovascular disease (CVD) risk is emerging.
- Understanding patient and clinician perceptions of utility and acceptability is crucial for implementation.
- Genomics-enabled learning health systems require data on user perspectives.
Purpose of the Study:
- To assess patient and clinician perceptions of a 158-gene CVD risk panel (HeartCare).
- To evaluate the utility, disutility, and impact on clinical recommendations of CVD genetic testing.
- To understand patient attitudes towards integrating research and clinical care.
Main Methods:
- Surveys administered to patients and clinicians in the HeartCare Study.
- Assessment of perceived utility, disutility, and impact on clinical recommendations.
- Evaluation of patient attitudes towards research-clinical care integration.
Main Results:
- Most patients (88.3%) found CVD genetic testing beneficial, with 81.2% wanting the information.
- Patients generally did not feel confused (77.7%) or overwhelmed (78.0%) by results.
- Clinicians reported changes in clinical care (66.4%) and health behaviors (36.9%) for patients with positive results.
Conclusions:
- Patients and clinicians perceive CVD genetic screening panels as useful for personal/health benefits and informing clinical care.
- Testing provides valuable information without causing patient confusion or overwhelm.
- Further research is needed on genome-wide screening perceptions in US cardiology settings.
Background:
Routine genome-wide screening for cardiovascular disease risk may inform clinical decision-making. However, little is known about whether clinicians and patients would find such testing useful or acceptable within the context of a genomics-enabled learning health system.
Methods:
We conducted surveys with patients and their clinicians who were participating in the HeartCare Study, a precision cardiology care project that returned results from a next-generation sequencing panel of 158 genes associated with cardiovascular disease risk. Six weeks after return of results, we assessed patients' and clinicians' perceived utility and disutility of HeartCare, the effect of the test on clinical recommendations, and patients' attitudes toward integration of research and clinical care.
Results:
Among 666 HeartCare patients with a result returned during the survey study period, 42.0% completed a full or partial survey. Patient-participants who completed a full survey (n=224) generally had positive perceptions of HeartCare independent of whether they received a positive or negative result. Most patient-participants considered genetic testing for cardiovascular disease risk to have more benefit than risk (88.3%) and agreed that it provided information that they wanted to know (81.2%), while most disagreed that the test caused them to feel confused (77.7%) or overwhelmed (78.0%). For 122 of their patients with positive results, clinicians (n=13) reported making changes in clinical care for 66.4% of patients, recommending changes in health behaviors for 36.9% of patients, and recommending to 33.6% of patients that their family members have clinical testing.
Conclusions:
Both patients and clinicians thought the HeartCare panel screen for cardiovascular disease risk provided information that was useful in terms of personal or health benefits to the patient and that informed clinical care without causing patients to be confused or overwhelmed. Further research is needed to assess perceptions of genome-wide screening among the US cardiology clinic population.
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