Outpatient Pediatric Palliative Medicine: Complex Lives, Comprehensive Services.


Outpatient Pediatric Palliative Medicine: Complex Lives, Comprehensive Services.


Vandermeer R; Medellin G; Sanchez-Reilly S; Healy J


DOI: http://dx.doi.org/10.1016/j.jpainsymman.2015.12.220


Journal Of Pain And Symptom Management




Identify the diagnoses and death rate found in an
outpatient pediatric palliative care clinic.
Describe the technology and community supports
used by children with medical complexity and
incurable illness.
Original Research Background. Pediatric palliative
services nationwide enroll children with life-limiting,
but not acutely life threatening chronic illness. Children
receiving inpatient palliative services, the most
prevalent service delivery model, have a survival rate
of nearly 75% at one year. In response to the long survival
rate of pediatric palliative care patients and the
need for outpatient palliative services, University
Health System (UHS) developed a medical home
clinic that provides integrated palliative and primary
care for children with medical complexity or incurable
Research Objectives. To discuss the demographics
and characteristics of a comprehensive outpatient pediatric
palliative care clinic.
Methods. A retrospective chart review was performed
for all patients seen in the UHS Comprehensive Care
Clinic (UHS CCC) between September 2013 and
February 2015. The main endpoints are predominant
diagnoses categories, technology supports, community
supports and death rate.
Results. In a 1.5 year period, the UHS CCC performed
2338 visits for 359 enrolled children, which averages
out to 4.3 visits per patient per year. Sixty-six
percent used a gastrostomy for nutrition, 25% had tracheostomy,
30.3% required ventilator support, and
56.9% received home health nursing. The death rate
for this clinic population is 4.3 deaths per 100 patients
per year. 4.8% were enrolled in concurrent hospice at
some point over the study period. The breakdown of
diagnoses is: 41.5% neuromuscular, 33.5% congenital,
5.9% cardiovascular, 5.3% oncologic, 4.3% gastrointestinal,
1.6% respiratory, and 8% other.
Conclusion. This demographic study describes the
high complexity of outpatients receiving care in an
outpatient pediatric palliative care clinic. The outpatient
pediatric palliative population is dependent on
both technology and community professionals. The
death rate requires supporting patients at end of life.
Implications for Research, Policy, and
Practice. Caring for palliative care children in the
outpatient setting requires not only expertise in endof-life
care, but also in management of complex
chronic conditions and primary care needs.


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Vandermeer R; Medellin G; Sanchez-Reilly S; Healy J, “Outpatient Pediatric Palliative Medicine: Complex Lives, Comprehensive Services.,” Pediatric Palliative Care Library, accessed November 27, 2022, https://pedpalascnetlibrary.omeka.net/items/show/10573.

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