IMPACT webinars: Improving Patient Access to genetic Counselling and Testing using webinars-the Alberta experience with hypertrophic cardiomyopathy.
Susan ChristianJulia TagoeLenore DeldayFrancois P BernierRuth KohutRaechel FerrierPublished in: Journal of community genetics (2021)
Growing demand for genetic counselling and testing has created a need for innovative service delivery models to provide quality care in an efficient manner. The goal of this study was to develop and evaluate a patient-facing webinar providing pre-test genetic counselling to individuals with hypertrophic cardiomyopathy. A patient-facing webinar was developed and implemented between April 2019 and January 2021. It was evaluated using the Alberta Quality Matrix for Health framework, which considers the patient experience across the domains of effectiveness, appropriateness, acceptability, accessibility, and efficiency. The webinar group showed comparable scores to controls with regard to self-perceived knowledge and decisional conflict. The majority of patients reported that the webinar met their expectations and was an acceptable replacement for a 1:1 genetic counselling appointment. Finally, the webinar reduced genetic counsellor time to an average of 24 min per patient. Providing pre-test genetic counselling to index hypertrophic cardiomyopathy patients via a group webinar has achieved a high quality of care, and optimized use of provider and space resources.
Keyphrases
- hypertrophic cardiomyopathy
- healthcare
- left ventricular
- end stage renal disease
- genome wide
- case report
- mental health
- chronic kidney disease
- copy number
- newly diagnosed
- smoking cessation
- peritoneal dialysis
- systematic review
- palliative care
- quality improvement
- public health
- prognostic factors
- physical activity
- depressive symptoms
- climate change
- patient reported outcomes