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DownloadEvaluation of a digitally enabled, clinical scientist-led clinic for people with hypertrophic cardiomyopathy
Overview
Hypertrophic cardiomyopathy (HCM) is a cardiac condition defined by the thickening and stiffness of a specific area of the heart muscle. It is estimated to affect 1 in 500 people in the UK and is a relatively common condition that often presents with few or no symptoms, leading to many cases remaining undiagnosed.
Guy’s and St Thomas’ NHS Foundation Trust (GSTT), in partnership with Bristol Myers Squibb (BMS), delivered an 18-month collaborative project to optimise care for people with HCM with left Ventricular Outflow Tract Obstruction (LVOTO). Launching in January 2024, the pilot sought to improve and streamline care by embedding digital technologies and a clinical scientist-led LVOTO clinic.
The project lasted for 12 months and introduced:
- A clinical scientist‑led LVOTO clinic, enabling streamlined, specialist monitoring for patients newly initiated on Mavacamten, the first targeted therapy for obstructive HCM (approved in the UK in December 2023).
- Ortus‑iHealth, a digital outpatient platform used for remote monitoring, clinical dashboards, video consultations, patient‑reported outcomes, and two‑way communication with the GSTT Inherited Cardiac Conditions (ICC) team.
BMS commissioned the Health Innovation Network (HIN) South London via GSTT to evaluate patient and staff experiences of this new model of care.
Key findings
What worked well:
- The clinical scientist‑led model was highly effective: Patients benefitted from a consistent point of contact, continuity of care, and a “one‑stop‑shop” experience, in which the clinical scientist could perform echocardiograms, interpret tests, and conduct reviews.
- High trust and satisfaction from patients: Patients described feeling “extremely well cared for” due to clear communication, thorough explanations and personalised support from the clinical scientist.
- Clinical Nurse Specialists (CNS) improved efficiency: CNS‑led pre‑assessment (including CYP2C19 testing and preparatory guidance) enhanced clinic flow and prepared patients for what to expect.
- Significant symptom reduction with Mavacamten: Patients reported meaningful improvements in day‑to‑day symptoms such as breathlessness and fatigue.
Challenges identified:
- Delays outside the clinic itself: Patients experienced long waits for blood tests and prescription processing, despite the clinic appointments being quick and well‑organised.
- Geographical barriers: Though accessible across London and the South east of England, travel time and cost continue to limit engagement.
- Capacity constraints: Limited clinical space due to the time and space needed to conduct echocardiograms.
- Ongoing physical and psychological barriers to activity: Even with symptom improvement, some patients struggled to re‑engage with exercise.
- Risk of digital exclusion: Not all patients felt confident or willing to engage with digital platforms like Ortus.
Key recommendations
- Enhancing holistic support for patients: Providing personalised cardiac rehabilitation resources to address long-standing anxieties about physical effort.
- Supporting inclusive and effective digital engagement: Ensuring patients who are unable to use Ortus are offered either paper-based options or given guidance on how to access digital technology.
- Strengthen service capacity and capabilities: To meet the increasing demand and prevent patient flow bottlenecks, clinicians need to secure access to specialised physical space for echocardiograms and other diagnostic procedures.
- Expand access and equity to the clinic: Use GSTT’s main site as the hub for initiation and sophisticated treatment, and local sites as spokes for continued monitoring and follow-up to allow patients to get Mavacamten more locally to their homes.