Local nurse-led hypertrophic cardiomyopathy clinics: profiling the caseload

Background

In 2017 the West of Scotland Inherited Cardiac Conditions (ICC) service received British Heart Foundation funding to develop local nurse-led hypertrophic cardiomyopathy (HCM) clinics across Scotland, including within NHS Ayrshire and Arran (NHSA&A). Those with stable HCM, and family members at risk of HCM, can attend for clinical/risk assessment, and individually-tailored lifestyle advice/education. When the clinics were first established, the characteristics of those attending were largely unknown.

Aims

This project aimed to profile the NHSA&A HCM clinic caseload. Specifically, the project aimed to describe the cohort at point of referral, plus examine clinical outcomes over five years.

Methods

Data were collected from the first n=100, from April 2018. At point of referral, data were collected on demographics and co-existing morbidities, and diagnostic information and symptoms. For the period April 2018-March 2023, data were collected on mortality, unscheduled care usage and medical/surgical interventions.

Results

The first n=100 comprised n=80 with established HCM and n=20 at risk of HCM. Table 1 shows point of referral data. Over five years, in those with established HCM, there were ten deaths (cardiovascular disease [CVD] was the primary cause for six). There was one non-CVD death in those at risk of HCM. Those with established HCM accrued 134 admissions (65 due to CVD) totalling 576 bed days. Those at risk of HCM accrued two non-CVD admissions totalling 13 days. In those with established HCM, n=10 underwent septal myectomy/ablation, a further n=4 valve surgery, and n=14 had a cardiac device inserted. No one at risk of HCM required medical/surgical intervention during the time period.

Conclusion

These data highlight substantial differences in initial presentation and clinical outcomes between those with established HCM and those at risk. The data have informed service development and enhanced its ability to anticipate and respond to the needs of the whole clinic caseload.