Healthcare resource utilization (HCRU) and disease burden of hypertrophic cardiomyopathy: a nationwide population-based study from Sweden

Background/Introduction Hypertrophic cardiomyopathy (HCM) is the most common inherited cardiovascular disorder, affecting 1 in 500 individuals globally. HCM varies from asymptomatic disease to a highly symptomatic obstructive HCM (oHCM). Purpose This study characterized the Swedish HCM population and assessed healthcare utilization with both direct and indirect costs to estimate the overall disease burden. Methods This nationwide population-based register study included all Swedish adults (aged ≥18) diagnosed with HCM (ICD-10-SE I42.1, I42.2) during the study follow-up, 2012-2023, identified via the Swedish National Patient Register. Due to universal healthcare, the data capture nearly all Swedish HCM patients. Additional data were retrieved from the Prescribed drug register, the National Cause of Death register, and the Microdata for Analysis of Social Insurance. Patients were stratified into oHCM (I42.1) and other HCM (I42.2) for analysis. Notably, the other HCM group does not exclusively comprise of non-obstructive disease forms but is a group with various HCM forms. Direct costs were estimated from healthcare contacts using list prices, and indirect costs from lost income due to sick leave, early retirement, or premature death. Costs and contacts per patient were analysed using mean cumulative functions. Results This study identified 9,748 unique HCM patients, of whom 38.7% had oHCM and 61.3% other HCM. The median age at diagnosis was 67 years for both oHCM and other HCM patients (oHCM IQR: 57-75, other HCM IQR: 53-77), and 16.7% and 27.6% of patients were of working age (18-65), respectively. HCM patients averaged 4.01 healthcare contacts per year, compared to reported 3.48 annual contacts for Swedish 65-79-year-olds1. Cumulative healthcare contacts per patient were 95 (95%CI: 90-99) for oHCM and 83 (95% CI: 78-87) for other HCM (Fig 1), with 16.7% of overall contacts from cardiovascular specialties. Mean annual direct costs were 67kSEK (95% CI: 64-70) for oHCM and 58kSEK (95% CI: 55-61) for other HCM, both of which are significantly higher than previously reported annual costs for Swedish 65-69-year-olds (28kSEK for women and 32kSEK for men)2. Among working-age patients, mean number of sick-leave days was 258 (95% CI: 225-290) for oHCM and 169 (95% CI: 147-191) for other HCM (Fig 2). Indirect costs were higher in oHCM, with sick leave, sickness compensation, and premature death contributing to up to 2MSEK cumulative costs per patient. HCM was the main cause of absenteeism across all patients. Conclusions HCM imposes a substantial healthcare and societal disease burden, with higher HCRU and costs than previously reported for Swedish individuals in the age span 65-79 years of age. Within HCM patients, HCRU, costs, and productivity loss were consistently higher for oHCM patients, highlighting also the individual-level burden of disease.Fig 1.Healthcare contacts by HCM subtypeFig 2.