The Health Care Initiative For Improving End Of Life In Pulmonary Hypertension (CARING)

RATIONALE: Despite recent advances in therapeutics, pulmonary arterial hypertension (PAH) remains a fatal condition. While studies suggest quality of life is often poor for PAH patients, little is known about specific problematic symptoms or how they are managed in patient’s final days. We are further unaware of studies that have assessed end-of-life issues in PAH. In order to better understand the struggles PAH patients and their caregivers face at the end-of life, we attempted to determine the prevalence of symptoms and utilization patterns of palliative medicine and hospice services in a PAH population. By identifying key areas of unmet need, we hope to generate hypotheses to be studied prospectively. In this report, we present preliminary data from our study. METHODS: We surveyed the next-of-kin of recent decedents who died from PAH. Decedents lived in the mid-Atlantic region of the U.S. and were identified based on report of death to their pharmaceutical providers (Accredo Therapeutics). Physician providers also agreed to participation. The survey instrument is shown in Figure 1. Figure 1