Socioeconomic Burden of Pulmonary Arterial Hypertension in Patients and Caregivers: A Canadian Cross-sectional Study

Abstract Background Pulmonary arterial hypertension (PAH) is a serious condition that can impair daily functioning, employment, and quality of life for working-age individuals. We evaluated the real-world socioeconomic burden of PAH on patients and their caregivers. Methods We conducted a cross-sectional survey of adult Canadian patients between 15-Aug-2023 and 09-Oct-2023. Using the Work Productivity and Activity Impairment questionnaire, EQ-5D Visual Analogue Scale, and additional survey items, we assessed employment status, work limitations, changes in work patterns, quality of life, and perceived caregiver burden. Predictors of employment were identified using multivariate logistic regression. Results Among 217 participants, 61 (28%) were employed. Working participants reported high presenteeism, i.e. impairment while working due to PAH (50%, IQR 10, 70). Older age (OR 0.62, 95% CI 0.54-0.72, p<0.001), worse functional class (III-IV compared to I-II; OR 0.38, 95% CI 0.17-0.82, p=0.014), increased time from PAH diagnosis (OR 0.72, 95% CI 0.54-0.95, p=0.022), and parenteral prostanoids (OR 0.30, 95% CI 0.09-1.00, p=0.050) were associated with lower odds of employment, while being in a living-together relationship (OR 3.58, 95% CI 1.40-9.17, p=0.008) was associated with being employed. Caregiver support was required by 92 patients (45%), with caregivers contributing a perceived median of 15 hours (IQR 6, 35) per week and losing an estimated 4 hours (IQR 0, 10) of potential work hours per week. Conclusions PAH imposes a substantial socioeconomic burden on patients and caregivers. Patients with PAH experience low rates of employment, high presenteeism, and significant caregiver work loss, highlighting an underrecognized aspect of PAH care.