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IMPACT webinars: Improving Patient Access to genetic Counselling and Testing using webinars-the Alberta experience with hypertrophic cardiomyopathy.

ABSTRACT: 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.

SUBMITTER: Christian S

PROVIDER: S-EPMC8582342 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:Background: Apical hypertrophic cardiomyopathy (aHCM) is thought to have a more benign clinical course compared to septal HCM (sHCM), but most data have been derived from Asian cohorts. Comparative data on clinical outcome in Caucasian aHCM cohorts are scarce, and the results are conflicting. The aim of this study was to estimate the prevalence and outcome of aHCM in French-Canadians of Caucasian descent. Methods and results: We conducted a retrospective, single-center cohort study. The primary endpoint was a composite of documented sustained ventricular arrhythmia (VA), appropriate ICD therapy, arrhythmogenic syncope, cardiac arrest, or all-cause mortality. A total of 301 HCM patients (65% males) were enrolled including 80/301 (27%) with aHCM and 221/301 (73%) with sHCM. Maximal wall thickness was similar in both groups. Left ventricular apical aneurysm was significantly more common in aHCM (10 vs. 0.5%; p < 0.001). The proportion of patients with myocardial fibrosis ≥ 15% of the left ventricular mass was similar between aHCM and sHCM (21 vs. 24%; p = 0.68). Secondary prevention ICDs were more often implanted in aHCM patients (16 vs. 7%; p = 0.02). The primary endpoint occurred in 26% of aHCM and 10.4% of sHCM patients (p = 0.001) and was driven by an increased incidence of sustained VA (10 vs. 2.3%; p = 0.01). Multivariate analysis identified apical aneurysm and a phenotype of aHCM as independent predictors of the primary endpoint and the occurrence of sustained ventricular tachycardia. Unexplained syncope and a family history of sudden cardiac death were additional predictors for sustained VA. Apical HCM was associated with an increased risk of ventricular arrhythmia even when excluding patients with apical aneurysm. Conclusions: The phenotype of apical HCM is much more common in French-Canadians (27%) of Caucasian descent compared to other Caucasian HCM populations. Apical HCM in French-Canadians is associated with an increased risk for ventricular arrhythmia.

Project description:BackgroundGuideline producers are increasingly producing versions of guidelines for the public, and knowledge of what the public want from them is also increasing. The aim of this study was to user test a patient version of a SIGN clinical guideline that was designed based on preliminary work for the DECIDE project. SIGN is the leading national guideline producer in Scotland.MethodsPeople with a diagnosis of glaucoma and non-professional carers were recruited from across Scotland. User testing was conducted using a think-aloud protocol method. Each session was conducted by one interviewer and one observer. All sessions were recorded and transcribed. The data was analysed, problems with the guideline were identified and resolved and key findings were themed using a user experience model.ResultsThirteen user testing sessions with people with glaucoma and one with a carer were conducted. Key facilitators of desirability and usability identified include clear branding as a patient version and a clearly described purpose, audience and contents page. Other facilitators include a "friendly" tone which is achieved by the use of colour, quotes, icons, simple language and charts, and brief chunked text. The value and usefulness of the patient guideline was influenced by its ability to: inform the public, link information to actions, and empower people in their interaction with healthcare professionals. Participants were disappointed by the lack of information on treatment in the patient version, which was outside its scope. Information on the evidence based guideline production process and the involvement of appropriately skilled professionals was key to the credibility of the guideline. Lack of awareness of guidelines and guideline producing bodies, is a potentially serious threat to findability/accessibility.ConclusionsIt is important for guideline producers to maximise the user experience of the public when they access patient versions of guidelines, particularly given the current low level of access and awareness. One size does not fit all and guideline producers need to strike a balance between keeping the patient version simple and providing sufficient information to facilitate shared decision making and empower the public. Guideline producers may find the results of this study useful in designing their own patient versions.

Project description:ObjectivesIt is unclear if morphology impacts on diastole in hypertrophic cardiomyopathy (HCM). We sought to determine the relationship between various parameters of diastolic function and morphology in a large HCM cohort.SettingTertiary referral centre from Stanford, California, USA.Partecipants383 patients with HCM and normal systolic function between 1999 and 2011. A group of 100 prospectively recruited age-matched and sex-matched healthy participants were used as controls.Primary and secondary outcome measuresEchocardiograms were assessed by two blinded board-certified cardiologists. HCM morphology was classified as described in the literature (reverse, sigmoid, symmetric, apical and undefined).ResultsReverse curvature morphology was most commonly observed (218 (57%). Lateral mitral annular E'<12 cm/s was present in 86% of reverse, 88% of sigmoid, 79% of symmetric, 86% of apical and 81% of undefined morphology, p=0.65. E/E' was similarly elevated (E/E': 12.3±7.9 in reverse curvature, 12.1±6.1 in sigmoid, 12.7±9.5 in symmetric, 9.4±4.0 in apical, 12.7±7.9 in undefined morphology, p=0.71) and indexed left atrial volume (LAVi)>40 mL/m(2) was present in 47% in reverse curvature, 33% in sigmoid, 32% in symmetric, 37% in apical and 32% in undefined, p=0.09. Each morphology showed altered parameters of diastolic function when compared with the control population. Left ventricular (LV) obstruction was independently associated with all three diastolic parameters considered, in particular with LAVi>40 mL/m(2) (OR 2.04 (95% CI 1.23 to 3.39), p=0.005), E/E'>15 (OR 4.66 (95% CI 2.51 to 8.64), p<0.001) and E'<8 (OR 2.55 (95% CI 1.42 to 4.53), p=0.001). Other correlates of diastolic dysfunction were age, LV wall thickness and moderate-to-severe mitral regurgitation.ConclusionsIn HCM, diastolic dysfunction is present to similar degrees independently from the morphological pattern. The main correlates of diastolic dysfunction are LV obstruction, age, degree of hypertrophy and degree of mitral regurgitation.

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IMPACT webinars: Improving Patient Access to genetic Counselling and Testing using webinars-the Alberta experience with hypertrophic cardiomyopathy.

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