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Frequency of Palliative Care Referrals in Newly Diagnosed Pulmonary Arterial Hypertension (PAH): The Pulmonary Hypertension Association Registry

Michael Gray

R Wright

Rubina Khair

David Badesch

Sonja Bartolome

K Boyle

Todd Bull

Murali Chakinala

Teresa De Marco

Jean Elwing


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Conference: 2018 PHA International PH Conference & Scientific Sessions

Release Date: 06.28.2018

Presentation Type: Abstracts

File Download: Conference 2018_1046

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2018 International PH Conference and Scientific SeAbstract presented at the 2018 International PH Conference and Scientific Sessions in Orlando, Fla., June 28-July 1, 2018.

Authors (Continued)

Feldman J, Ford HJ, Frantz RP, Grinnan DC, Klinger JR, Lammi MR, McConnell JW, Berman Rosenzweig E, Runo JR, Sager JS, Shlobin OA, Thenappan T, Ventetuolo CE, White RJ, Williamson TL, Zamanian RT, Mathai SC


In addition to a high mortality, PAH carries imposes significant morbidity with a high burden of disease. Despite improvements in functional capacity (FC) and delayed time-to-clinical-worsening in randomized clinical trials, changes in symptoms and health-related quality of life (HRQOL) are of limited magnitude and rarely achieve clinical significance. Palliative care (PC) improves HRQOL, decreases anxiety and depression, and improves survival in patients with various chronic and terminal diseases. However, there are no studies to date examining the role of PC in a PAH population. Therefore, we sought to determine the frequency of formal PC referrals in the PHA Registry (PHAR), and to characterize PAH patients referred to PC.


We performed a cohort study of newly-evaluated patients ≥18 years of age with PAH. Baseline demographic, socioeconomic status (SES), clinical phenotype, and supportive care data were collected, as well as the SF-12 and emphasis-10. Time-to-PC-referral was determined by calculating the time from enrollment to reported PC referral, as captured by subsequent 6-month follow-up data entry per the PHAR protocol.


We included 145 newly diagnosed PAH patients in the analysis. Initial and subsequent assessment of PC referral status were made at each 6-month follow-up visit. Six (4.1%) were referred to PC at a median time of 14.7 months (IQR 8.6-20.4) after initial evaluation. PC referred patients were older, with lower BMI, shorter 6-minute walk distance, poor hemodynamics, usually on parenteral prostacyclin and supplemental oxygen therapy, and reported a worse HRQOL by EmPHasis-10 score at the time of enrollment (Table 1).


Incident adult PAH patients enrolled in PHAR had a very low rate of referral to PC during immediate-term follow-up. PC referred patients were more likely to be receiving parenteral therapy and be on supplemental oxygen, and to report a worse HRQOL by EmPHasis-10 score at the time of enrollment. These findings demonstrate the need for further study into the role and timing of PC in PAH and to identify barriers to PC referral.