Socioeconomic Burden of Pulmonary Arterial Hypertension on Patients and Caregivers in the Czech Republic
Author(s)
Pavel Jansa, Prof.1, Lucie Miksova, MD.1, Marcel Ourada, MD.1, Vladimir Dytrych, MD.1, Jan Precek, MD.2, Jana Alahakoon, PharmD3, Tomas Mlcoch, MSc.3, Jakub Zadak, MSc.3, Tomáš Doležal, PhD, MD4, Katerina Doleckova, MSc.4, Lada Souza, Dr.4, Martin Hutyra, Prof.2.
12nd Department of Medicine—Department of Cardiovascular Medicine, First Faculty of Medicine, Charles University, and General University Hospital, Prague, Czech Republic, 2Department of Internal Medicine I - Cardiology, Faculty of Medicine and Dentistry, Palacky University and Olomouc University Hospital, Olomouc, Czech Republic, 3MSD, Prague, Czech Republic, 4Value Outcomes, Prague, Czech Republic.
12nd Department of Medicine—Department of Cardiovascular Medicine, First Faculty of Medicine, Charles University, and General University Hospital, Prague, Czech Republic, 2Department of Internal Medicine I - Cardiology, Faculty of Medicine and Dentistry, Palacky University and Olomouc University Hospital, Olomouc, Czech Republic, 3MSD, Prague, Czech Republic, 4Value Outcomes, Prague, Czech Republic.
OBJECTIVES: Pulmonary arterial hypertension (PAH) is a rare, progressive disease that can lead to right heart failure, significantly affecting both patients and their caregivers.This study aimed to evaluate the societal impact of PAH on both patients and caregivers, focusing on the direct and indirect costs of PAH in the Czech Republic. Additionally, we assessed the clinical, economic, and time burdens from the perspectives of patients, caregivers, social security, and society as a whole.
METHODS: We conducted a single-arm, non-interventional, multicentric, cross-sectional study that integrated questionnaires from patients and caregivers with patient medical records review. Data were collected between June and September 2024. Work productivity and activity impairment was measured using Work Productivity and Activity Impairment Questionnaire (WPAI) and caregiver burden using Zarit Burden Interview (ZBI).
RESULTS: Data from 80 patients (mean age 53.5 years; 73.8% female) with PAH classified in WHO functional classes II and III, along with 19 caregivers, were analyzed. Only 31.4% of patients (n=25) were economically active (13.8% employed full-time) with work productivity reduced by 30.5% (WPAI). Among patients of productive age, 81% (n=43) reported receiving a disability pension, with 62.8% of them (27 patients) classified with the most severe disability. The mean EQ-5D score was 0.64 (general population scores 0.88) and EQ-5D-VAS score was 68.4 and activity impairment of 46.2%. Among the 19 caregivers, 52.6% were female, with a mean age of 54.8 years. Caregivers experienced a 30.8% reduction in work productivity, reported 38.3% activity impairment, and provided an average of 2.16 hours of care per day. Caregiver burden was comparable to that of caregivers of patients with advanced cancer (ZBI).
CONCLUSIONS: PAH presents significant challenges for both patients and caregivers, severely impairing their quality of life, daily activities, and work productivity. The economic burden of PAH extends beyond individual patients, impacting families and society as a whole.
METHODS: We conducted a single-arm, non-interventional, multicentric, cross-sectional study that integrated questionnaires from patients and caregivers with patient medical records review. Data were collected between June and September 2024. Work productivity and activity impairment was measured using Work Productivity and Activity Impairment Questionnaire (WPAI) and caregiver burden using Zarit Burden Interview (ZBI).
RESULTS: Data from 80 patients (mean age 53.5 years; 73.8% female) with PAH classified in WHO functional classes II and III, along with 19 caregivers, were analyzed. Only 31.4% of patients (n=25) were economically active (13.8% employed full-time) with work productivity reduced by 30.5% (WPAI). Among patients of productive age, 81% (n=43) reported receiving a disability pension, with 62.8% of them (27 patients) classified with the most severe disability. The mean EQ-5D score was 0.64 (general population scores 0.88) and EQ-5D-VAS score was 68.4 and activity impairment of 46.2%. Among the 19 caregivers, 52.6% were female, with a mean age of 54.8 years. Caregivers experienced a 30.8% reduction in work productivity, reported 38.3% activity impairment, and provided an average of 2.16 hours of care per day. Caregiver burden was comparable to that of caregivers of patients with advanced cancer (ZBI).
CONCLUSIONS: PAH presents significant challenges for both patients and caregivers, severely impairing their quality of life, daily activities, and work productivity. The economic burden of PAH extends beyond individual patients, impacting families and society as a whole.
Conference/Value in Health Info
2025-11, ISPOR Europe 2025, Glasgow, Scotland
Value in Health, Volume 28, Issue S2
Code
PCR219
Topic
Economic Evaluation, Patient-Centered Research, Real World Data & Information Systems
Topic Subcategory
Patient-reported Outcomes & Quality of Life Outcomes
Disease
Cardiovascular Disorders (including MI, Stroke, Circulatory), Rare & Orphan Diseases