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2013 ; 3
(2
): 129-38
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Care of the complex chronically ill child by generalist pediatricians: lessons
learned from pediatric palliative care
#MMPMID24340413
Walter JK
; DeCamp LR
; Warrier KS
; Murphy TP
; Keefer PM
Hosp Pediatr
2013[Apr]; 3
(2
): 129-38
PMID24340413
show ga
BACKGROUND AND OBJECTIVE: Parents of children with complex chronic conditions
report fragmented care, unmet medical needs, and financial strain from health
care costs. The aim of this study was to identify both prevalent themes discussed
during pediatric palliative care consultation of patients with complex chronic
conditions cared for by pediatric generalists and variation in consultation
content by age and timing of consultation in disease course. METHODS: Forty
randomly selected initial inpatient or outpatient consultation notes authored by
the pediatric palliative care team at an academic, tertiary care children's
hospital. Inclusion required that patients were primarily cared for by general
pediatricians, pediatric hospitalists, or pediatric intensivists, instead of
subspecialists. Qualitative analysis by 5 team members utilizing consensus-based
findings was used to develop themes. Descriptive statistics were used to describe
variations in themes across age and disease course. RESULTS: Common themes
included thorough review of patient baseline functioning, current symptoms,
assessment of family's understanding of the prognosis of the patient,
coordination of communication with other medical teams and outpatient health care
services, consideration of caregiver resources and burdens, and offering a
framework for decision-making. Variation in consult themes by age/disease course
included more discussion of communication problems and symptom management when
patients were at their baseline, but otherwise little variation was found.
CONCLUSIONS: Common themes covered in initial consultations correspond with
documented unmet needs for chronically ill children. There was no significant
variation in consultation themes by age/disease course, suggesting that
generalists could broadly apply palliative care techniques to improve
family-centered care.
|*Parents
[MESH]
|*Referral and Consultation
[MESH]
|Adolescent
[MESH]
|Child
[MESH]
|Child Health Services/organization & administration
[MESH]
|Child, Preschool
[MESH]
|Chronic Disease/*therapy
[MESH]
|Female
[MESH]
|General Practice/*methods
[MESH]
|Humans
[MESH]
|Infant
[MESH]
|Male
[MESH]
|Palliative Care/*methods/statistics & numerical data
[MESH]