OBJECTIVES: Obstructive hypertrophic cardiomyopathy (HCM) is a chronic, myocardial disease largely caused by dysfunction in the sarcomere, which can lead to myocardial changes that increase the risk of sudden cardiac death and heart failure. Evidence on the indirect costs of the disease is scarce since cause of death records may underestimate the true mortality burden. This study fills the current knowledge gap regarding the societal burden on Norwegian patients and society.

METHODS: Productivity losses due to absenteeism were calculated using the Norwegian Labor and Welfare Administration data on the number of people receiving benefits due to HCM. Productivity losses due to premature death were estimated using an excess mortality approach, comparing age-group-specific all-cause mortality rates of the general Norwegian population with those of the obstructive HCM population using data from the Norwegian Cardiovascular Disease Registry (2017-2022). In an alternative specification, cause of death records for obstructive HCM patients were used instead. Employment rates by age group were applied to assign either market or non-market average wages to each patient. Patients with ≥1 hospital visits and an obstructive HCM diagnosis (ICD-10 code I42.1) between 2012 and 2022 were eligible.

RESULTS: 5,569 patients were eligible for the study, with an average of 351 new incident patients annually between 2017 and 2022. Obstructive HCM patients aged <80 had a significantly higher mortality burden when using registry data than when using cause of death records, with up to 8 additional deaths per year. Annual productivity losses from obstructive HCM in Norway were €7 million in terms of absenteeism and €13 million in terms of premature death.

CONCLUSIONS: Obstructive HCM places a significant burden on patients and society in terms of potential productivity losses. Ignoring losses due to premature death provides an incomplete picture of the true burden of the disease.