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access, barriers, palliative care, pediatric, pulmonary arterial hypertension, utilization



  1. Brown, Anna M. DNP, CPNP-PC
  2. Nelson, Brittany H. DNP, CPNP-PC
  3. Beuscher, Linda M. PhD, GNP-BC


Background: Pulmonary arterial hypertension (PAH) is a terminal disease that can be diagnosed in children and adults. Adverse effects of treatment combined with a terminal illness can lead to a plethora of unmet patient needs that can be addressed by palliative care (PC).


Aim: The primary aim was to assess access to PC among pediatric PAH programs. The secondary aim was to describe barriers to utilization.


Method: A survey using multiple choice and analog scale was distributed in May 2016 to query access and utilization of PC among PAH specialists in North America and attitudes regarding aspects of PC as it relates to PAH patients. The results were analyzed descriptively and reported as percentages and medians (interquartile range).


Results: Of 30 surveys completed, 93% reported having access. Of respondents with access, 82% reported that they had referred to PC in the past, and 64% in the last 12 months. The most common reason for using PC was for psychosocial, emotional, and/or spiritual needs related to terminal illness (86%). Concepts identified as barriers were negative connotation, timing of referral, increased anxiety, and lack of PC education.


Conclusion: Adequate access to PC is reported; however, utilization is suboptimal. Referral is also delayed, which may result in patients being less prepared for end of life. Provider perceptions of PC support the notion of PC, but incorporation of these services is difficult because of its negative connotation, lack of knowledge surrounding PC, fear of increased anxiety with referral, and difficulty knowing when to refer.