Abstract Rationale Pulmonary arterial hypertension (PAH) is a rare and progressive condition that can lead to right heart failure, significantly affecting both patients and their caregivers. This study aimed to assess the societal burden of PAH in the Czech Republic, both in patients and caregivers, focusing on the direct and indirect costs of PAH. Additionally, we evaluated the clinical, economic, and time-related burdens from the perspectives of patients, caregivers, the social security system, and society at large. Methods We conducted a single-arm, non-interventional, multicentric, cross-sectional study, combining patient and caregiver questionnaires with a review of patient medical records. Data were collected between June and September 2024. Results Data from 80 PAH patients (mean age 53.5 years; 73.8% female), classified in WHO functional classes II and III, and 19 caregivers (mean age: 54.8 years; 52.6% female), were analyzed. Only 31.4% of patients (n = 25) were economically active with 13.8% employed full-time. Among patients of productive age, 81% (n = 43) reported receiving a disability pension, with 62.8% of them (27 patients) classified as having the most severe level of disability. The mean value of disability pension amounted to 62.9% of the average net monthly income per capita in the Czech Republic. One-third (33.3%) of respondents (n = 75), received additional social benefits beyond the disability pension (care, housing, unemployment allowances, foreign pensions, long-term incapacity for work allowance, or child support) - mean amount was 5.5% of the average net monthly income per capita in the Czech Republic. Monthly out-of-pocket costs related to PAH (e.g. travel, medications, food supplements, vitamins, diet, special rehabilitation and sterile aids) represent 7.6% of the average net monthly income per capita in the Czech republic for patients and 2.0% for caregivers. Among working respondents, the mean number of PAH-related sick days, confirmed by a physician, was 15.77 days over the past 12 months. Patients attended an average of 10.89 planned and 1.49 unplanned (non-emergent) outpatient visits in the last 12 months, totaling 12.38 visits. The mean number of emergency room admissions due to PAH complications equals to 0.39 per patient per year, with 23.75% of patients requiring at least one such admission. Hospital admissions averaged 0.73 per patient annually, with a mean length of stay of 6.33 days. Conclusions PAH poses substantial challenges for both patients and caregivers, compounded by out-of-pocket expenses and growing reliance on support systems. The economic burden extends beyond the individual, affecting families and placing considerable strain on society as a whole. This abstract is funded by: MSD
Jansa et al. (Fri,) studied this question.
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