Impacts of a Novel Pediatric Neuropalliative Medicine Clinic: Characterization of Referrer Feedback.

BACKGROUND: Child neurologists provide care for children with complex chronic health conditions often accompanied by logistical and emotional complexities, as well as acute decision-making scenarios. Pediatric neuropalliative medicine is a nascent subspecialty that aims to augment standard child neurology practice by attending to not only the physical domains of neurologic disease but also the nonphysical issues that accompany advancing illness. The perceptions of clinicians who refer families for this kind of care have not previously been elucidated.

METHODS: This survey project queried referrers to a newly established pediatric neuropalliative medicine clinic to characterize their perceptions, including barriers and facilitators of referral and the impact of this service line on clinicians. Specifically, the authors sought to understand whether neurologists viewed this clinic differently than other referring clinicians.

RESULTS: A total of 94 surveys were completed, with 22% (n = 21) of respondents being neurology clinicians and 78% (n = 73) representing other pediatric specialties. Neurology clinicians were significantly more likely to report a preference for a neurologist in the palliative medicine role (76% of neurologists vs 16% of non-neurologists, P < 0.001). While all referrers identified at least one benefit of referral to this clinic, neurologists were more likely to report that this new resource positively impacted their understanding of palliative medicine and their ability to devote more energy to their area of focus.

CONCLUSIONS: Pediatric neuropalliative expertise is valued by referring clinicians, with the greatest impact described by neurologists. Referrers noted benefit to patient care as well as enhancement in professional domains.