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Impact of Specialized Pediatric Palliative Care: A Systematic Review
Katherine L Marcus1, Gisella Santos2, Agustín Ciapponi3
1Department of Pediatrics, Boston Children's Hospital, Boston, Massachusetts, USA.
Insights
Specialized pediatric palliative care (SPPC) improved child quality of life, but evidence is limited. More research and standardized practices are needed for seriously ill children receiving SPPC.
Area of Science:
- Pediatric Medicine
- Palliative Care Research
- Evidence Synthesis
Background:
- Specialized pediatric palliative care (SPPC) is increasingly vital for seriously ill children.
- Comprehensive reviews of SPPC's impact are lacking.
Purpose of the Study:
- To systematically review the effects of SPPC on patient, caregiver, and system outcomes.
- To assess the current evidence base for SPPC interventions.
Main Methods:
- Conducted a systematic review following Cochrane guidelines.
- Searched multiple databases (Medline, Embase, etc.) from 1996 to 2018.
- Included RCTs, cohort, case-control, and before-after studies; assessed risk of bias.
Main Results:
- Included 24 studies (1 RCT, 16 cohort, 7 before-after) with low certainty evidence.
- High risk of bias noted in 21 studies (selection bias, confounding).
- SPPC was associated with improved child quality of life in 4 studies; no other outcome showed consistent benefits.
Conclusions:
- SPPC shows potential for improving child quality of life.
- Limited and low-certainty evidence restricts firm recommendations for SPPC practice.
- Need for larger collaborative networks and standardized research methods in pediatric palliative care.
Context:
Specialized pediatric palliative care (SPPC) is increasingly involved in the care of seriously ill children, yet the evidence on its impact has not been comprehensively reviewed.
Objective:
The objective of this study was to assess the effects of providing SPPC to seriously ill children on patient-, caregiver-, and systems-level outcomes.
Methods:
We performed a Systematic Review following Cochrane methods.
Data Sources:
Medline, Embase, PsycINFO, Global Health, The Cochrane Central Register of Controlled Trials, LILACS, and Web of Science were searched from January 1996 to June 2018.
Study Selection/Data Extraction:
We included randomized controlled, cohort, case-control, and before-after studies in which exposure to SPPC services was the intervention of interest. All outcomes reported in these studies were included. Two investigators independently selected articles, extracted data, and assessed risk of bias of included studies using standardized criteria.
Results:
Twenty-four studies were included in qualitative synthesis: one nonrandomized controlled trial, 16 cohort studies, and seven before-after studies. Evidence certainty was low. Twenty-one studies had one or more area with high risk of bias, most commonly selection bias, low group comparability, risk for confounding, and inadequate statistical reporting. Studies analyzed 46 domains, operationalized as 136 distinct outcomes. SPPC was associated with better child quality of life scores in all four studies that assessed this outcome. No other outcome showed this consistency.
Conclusion:
Receiving SPPC was associated with better child quality of life. However, the paucity and low certainty of the evidence precluded any firm recommendations about SPPC practice. Larger collaborative networks and greater consensus regarding SPPC research standards are needed.
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