OBJECTIVES: To estimate healthcare resource use and health care costs of patients with the rare, progressive disease Transthyretin Amyloid Cardiomyopathy (ATTR-CM) in Sweden in relation to different stages of heart failure progression, assessed as deterioration in the New York Heart Association class (NYHA).

METHODS: An observational cross-sectional study based on reviews of medical records in patients with ATTR-CM. The study population included a strategic selection of patients >18 years with a confirmed diagnosis of ATTR-CM in different NYHA classes in two cardiology clinics in Sweden. Health care resource use was calculated for the last 12 months from the last registered contact for each patient.

RESULTS: The study population included 38 patients (mean age: 80 years, 89% male) of which 18% were NYHA class II, 53% NYHA class III and 11% NYHA class IV. Mean time (SD) from any cardiac symptoms prior to ATTR-CM diagnosis was 3.5 (3.1) years. Mean total health care cost during the 12-month period was approximately 200 000 SEK per patient, of which primary care contributed to 5%, specialist outpatient care to 25% and inpatient care to 70%. There was a clear trend of higher use/costs with increasing NYHA stages. The total health care cost per patient increased from 63 000 SEK in NYHA stage II, 212 000 SEK in NYHA stage III, to 632 000 SEK in stage IV, mainly due to an increase in patient hospitalizations. The cost of inpatient care accounted for 47% and 88% of total costs, respectively, in NYHA stage II and IV.

CONCLUSIONS: Severe stages of ATTR-CM are associated with extensive health care resource use. This study emphasizes the importance of early diagnosis, appropriate care, and treatment, which potentially can slow disease progression, reduce costly hospitalizations and decrease the burden of disease.