Release Date: 06.29.2018
Presentation Type: Abstracts
File Download: Abstract 1046
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Feldman J9, Ford HJ10, Frantz RP11, Grinnan DC12, Klinger JR13, Lammi MR14, McConnell JW15, Berman Rosenzweig E16, Runo JR17, Sager JS18, Shlobin OA19, Thenappan T20, Ventetuolo CE13, White RJ21, Williamson TL22, Zamanian RT23, Mathai SC2
9Arizona Pulmonary Specialists, Phoenix, AZ
10University of North Carolina at Chapel Hill, Chapel Hill, MD
11Mayo Clinic, Rochester, MN
12Virginia Commonwealth University, Richmond, VA
13Rhode Island Hospital, Providence, RI
14University Medical Center, LCMC Health, New Orleans, LA
15Kentuckiana Pulmonary Associates, Louisville, KY
16Columbia University Medical Center College of Physicians and Surgeons, New York, NY
17University of Wisconsin, Madison, WI
18Santa Barbara Cottage Health System, Santa Barbara, CA
19Inova Health System, Falls Church, VA
20University of Minnesota, Minneapolis, MN
21University of Rochester Medical Center, Rochester, NY
22University of Kansas, Kansas City, KS
23Stanford University, Stanford, CA
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.