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The End-of-Life Experience for a Cohort of Patients with Pulmonary Arterial Hypertension

Daniel Grinnan


Keith Swetz


Paul Fairman


Janet Pinson


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Conference: 2012 International PHA Conference and Scientific Sessions

Release Date: 06.22.2012

Presentation Type: Abstracts

Grinnan D1, Swetz K2, Fairman P1, Pinson J1

1. Virginia Commonewealth University; Richmond, VA; United States of America

2. Mayo Clinic; Rochester, MN; United States of America

BACKGROUNDPulmonary arterial hypertension (PAH) is a progressive disorder of the pulmonary circulation characterized by elevated pulmonary vascular resistance and ultimately leading to right ventricular failure and death.  The cost of treating patients with PAH accelerated with approval of multiple, expensive therapies (often over $100,000 per year). Little is known about the epidemiology of these patients’ deaths.  We describe the symptom burden and epidemiology of patients who have recently died of PAH.

METHODS:  We created a survey with epidemiologic information and including the Edmonton Symptom Assessment Scale (ESAS).  Accredo Therapeutics, a distributing pharmacy of multiple pulmonary hypertension medications, mailed the survey to the next-of-kin of patients who recently died with PAH.  Responses were mailed to the investigators at VCU without identifying information.  We partnered with Accredo to increase our event rate, as they service a broad geographic region.

RESULTS: 36/100 decedent families returned the survey. Mean ESAS scores were much higher than for comparable patients with malignancy, 56 vs 40. The majority of patients (66%) died in the hospital setting.  Of patients who died in the hospital, 83% died in an intensive care unit.  We found that pulmonary hypertension was associated with the vast majority (92%) of deaths.  Over 30% of surrogates were unaware of palliative care resources available, and over 20% of surrogates were unaware of hospice resources available. 

CONCLUSIONS: Our study indicates that palliative care and hospice resources are infrequently used in patients with PAH, and that patients often die in an intensive care setting with high symptom burden.