Quantifying the burden of pulmonary arterial hypertension on patients’ need for caregivers and caregiver work patterns: Results from a Canadian patient survey

<bold>Introduction:</bold> Patients with pulmonary arterial hypertension (PAH) frequently experience a decline in their functional capacity, necessitating support from others to complete daily activities. Our aim was to evaluate patients’ need for caregivers and the impact of supporting a patient with PAH on caregiver work productivity. <bold>Methods:</bold> We performed a cross-sectional study of symptomatic adult patients (≥18 years) with self-reported Group 1 PAH. A survey was distributed by the Pulmonary Hypertension Association of Canada from 15-08-2023 to 9-10-2023. Patients reported their need for caregivers, help with daily activities, and the estimated work productivity loss for each unpaid caregiver. <bold>Results:</bold> 217 patients met the inclusion criteria for participation. Most patients were female (84%) and White (84%) with a median age of 60 years (IQR 46, 68). The percentage of patients requiring caregiver assistance with daily activities increased as the self-reported New York Heart Association (NYHA) functional class (FC) worsened: the proportions were 11.8%, 36.5%, 56.9%, and 84.6% for FC I to IV, respectively. Similarly, caregivers lost a mean of 6, 7, 10, and 16 hours worked per week supporting patients with FC I to IV symptoms, respectively. In approximately half of the patients, spouses/partners assumed the role of caregiver, experiencing an average loss of 8 hours worked per week. <bold>Conclusion:</bold> PAH has a significant impact on the lives of patient caregivers. As the severity of PAH worsens, patients become increasingly reliant on caregiver support and caregivers experience greater losses in work productivity.