Abstract Rationale Pulmonary Arterial Hypertension (PAH) is a progressive and debilitating disease for patients and caregivers, impacting not only health but also employment and finances. This study describes these impacts as experienced from both patients’ and caregivers’ perspectives. Methods In-depth individual interviews were conducted January-March 2025, among U.S. patients with: a self-reported PAH diagnosis (World Health Organization Group 1), right heart catheterization, and at least one PAH-targeted therapy. Caregivers were interviewed if: they self-reported supporting any patient with PAH, were unpaid, and were spouse/partner, other family member, or friend to the patient they support. Affiliation with patient study participants was not a requirement of interviewed caregivers. All participants were either employed at least part-time or involved in financial decision making. Two moderators used semi-structured interview guides with open-ended questions about: impact of PAH on finances, work and activities of daily living. Interview transcripts were coded to identify emerging themes. Results Patient participants (n = 12) averaged 50 years old, and were mostly female (n = 10), white (n = 7), on double or triple therapy (n = 4, 5). Caregiver participants (n = 13) averaged 48 years old, and were mostly female (n = 8), partner/spouse of the patient who they support (n = 6), and averaged 30 hours per week providing support. Experiences of economic burden of PAH were coded into three main themes.Employment: Patients were often unable to work, having to quit or being fired - resulting in lost income. Caregivers had to make work accommodations in order to care for the patient, including missing work to take patients to appointments, working longer hours to make up for missed work, and switching to remote or hybrid work.Career advancement: Patients described missed promotions and inability to work in a “normal” work environment due to PAH. Regardless of age, they reported less financial independence and involvement in financial decision making after their PAH diagnosis. Caregivers described feeling “stuck” in their current position due to their caregiver role. Finances Both patients and caregivers cited decreasing overall household income, high insurance deductibles, and difficulty securing insurance coverage for medication. Financial changes were reported throughout the PAH journey, with expenses increasing with disease progression, but decreasing when PAH was better managed through treatment. Conclusions PAH forces both patients and caregivers to face major decisions regarding employment, limitations in career advancement, and reduced household income. Results document the promise of improved clinical management of PAH to help ease financial burden and cost for patients and their caregivers. This abstract is funded by: Merck & Co., Inc., Rahway, NJ, USA
Black et al. (Fri,) studied this question.