Long term outcomes in patients with RF/RHD: Eight-year follow-up of HP-RF/RHD (Himachal Pradesh Rheumatic Fever/Rheumatic Heart Disease) registry in a Northern Indian state

The long-term outcome data in patients with rheumatic fever/rheumatic heart disease (RF/RHD) is limited. We report the cumulative incidence of adverse outcomes in a cohort of RHD patients from a northern state of India at a median follow-up of 5.4 years. 1714 patients with RF/RHD diagnosed using clinical and echocardiographic criteria were registered from 2011 to 2018, and their baseline clinical characteristics and treatment practices were recorded. Patients were followed up annually for a median of 5.4 years (range 1–8 years) for incident adverse outcomes. The cumulative incidence of adverse composite outcomes, all-cause mortality, hospitalization for heart failure, stroke, and/or peripheral embolism was estimated. The baseline clinical characteristics were explored to identify the potential risk predictors using a multivariate cox proportional hazard model. The cumulative incidence of adverse composite outcomes was 17.1% (15.3%–19.0%) at a median follow-up of 5.4 years. The predictors for the adverse composite outcomes (hazard ratio, 95% confidence interval) were age (1.03, 1.02–1.04), education status below primary level (1.60, 1.23–2.05), severe valvular heart disease (1.74, 1.36–2.23), NYHA class III/IV at enrollment (1.56, 1.18–2.07), right heart failure (4.48, 2.85–6.95), history of stroke and/or peripheral embolism (3.7, 1.5–9.2) and mitral balloon valvuloplasty (0.62, 0.40–0.96). The incidence of adverse outcomes is substantial in patients with RF/RHD. Thus, early detection of high-risk patients and their risk management is needed to improve outcomes. •Contemporary data on long term outcomes in patients with RF/RHD is limited.•The incidence of adverse outcomes is variable across countries with different socioeconomic states.•India contributes to about 40% of the global burden of RF/RHD.•The long term outcome in patients with RF/RHD have not been reported from India.•The HP-RF/RHD registry data of long term outcomes bridges this knowledge gap.