Highlights
- •Palliative care referrals for patients with PAH described in a national registry.
- •Patients with PAH are referred infrequently and late to palliative care.
- •Age, BMI, oxygen, parenteral prostanoid, SF-12 correlated with referral.
Abstract
Background
Pulmonary arterial hypertension (PAH) is a life limiting disease with substantial
symptom burden and healthcare utilization. Palliative care alleviates physical and
emotional symptoms for patients with serious illness, and has been underutilized for
these patients.
Objective
To characterize patients with PAH referred to palliative care and identify predictors
of referral.
Methods
We conducted an observational study of adult patients enrolled in the Pulmonary Hypertension
Association Registry from January 2015 through June 2021, performing descriptive statistics
on patient characteristics at baseline for all patients and the subset referred to
palliative care. These characteristics were modeled in a backwards elimination Cox
regression with time to referral to palliative care as the primary outcome.
Results
92 of 1,578 patients were referred to palliative care (5.8%); 43% were referred at
their last visit prior to death. Referrals were associated with increasing age per
decade (hazard ratio 1.35 [95% confidence interval 1.16–1.58]), lower body mass index
(hazard ratio 0.97 [95% confidence interval 0.94–0.998]), supplemental oxygen use
(hazard ratio 2.01 [95% confidence interval 1.28–3.16]), parenteral prostanoid use
(hazard ratio 2.88 [95% confidence interval 1.84–4.51]), and worse quality of life,
measured via lower physical (hazard ratio 0.97 [95% confidence interval 0.95–0.99])
and mental (hazard ratio 0.98 [95% confidence interval 0.96–0.995]) scores on the
12-item Short Form Health Survey.
Conclusion
Patients with PAH are infrequently referred to palliative care, even at centers of
excellence. Referrals occur in sicker patients with lower quality of life scores,
often close to the end of life.
Keywords
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Article info
Publication history
Published online: November 29, 2022
Accepted:
November 24,
2022
Received in revised form:
October 7,
2022
Received:
July 19,
2022
Identification
Copyright
Published by Elsevier Ltd.
