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Palliative care initiation in pediatric oncology patients: A systematic review
Brian T Cheng1, Michael Rost2, Eva De Clercq2
1Department of Hematology and Oncology, Northwestern University Feinberg School of Medicine, Chicago, Illinois.
Insights
Palliative care (PC) for pediatric cancer patients is often delayed, with discussions and initiation occurring late in the illness. Many children do not receive PC services before death, highlighting a critical gap in care.
Area of Science:
- Pediatric Oncology
- Palliative Care Research
- Health Services Research
Background:
- Palliative care (PC) is crucial for improving quality of life in pediatric oncology patients and their families.
- International guidelines recommend PC initiation at diagnosis for children with cancer.
- Current practice often falls short of recommended early PC integration.
Purpose of the Study:
- To systematically review studies reporting the timing of palliative care initiation in pediatric oncology.
- To identify delays in PC discussion and service commencement.
- To understand the extent to which pediatric cancer patients receive PC services.
Main Methods:
- Systematic review of literature from PubMed, Web of Science, CINAHL, and PsycInfo.
- Independent screening and review of 1120 identified citations by two researchers.
- Inclusion criteria focused on studies reporting empirical time data for PC discussion and initiation in pediatric oncology.
Main Results:
- Only 16 articles met inclusion criteria, analyzing data from 1120 citations.
- 54.5% of pediatric oncology patients received any palliative care service before death.
- PC discussions and initiation were consistently found to occur late in the illness trajectory, near the time of death.
Conclusions:
- Significant delays exist in both the first discussion of PC and its actual initiation for pediatric cancer patients.
- Despite recommendations, many children with cancer do not receive timely or any palliative care services.
- Addressing complex determinants of PC utilization across the illness timeline is essential for earlier integration.
Abstract:
Palliative care (PC) aims to improve quality of life for patients and their families. The World Health Organization and American Academy of Pediatrics recommend that PC starts at diagnosis for children with cancer. This systematic review describes studies that reported PC timing in the pediatric oncology population. The following databases were searched: PubMed, Web of Science, CINAHL, and PsycInfo databases. Studies that reported time of PC initiation were independently screened and reviewed by 2 researchers. Studies describing pilot initiatives, published prior to 1998, not written in English, or providing no empirical time information on PC were excluded. Extracted data included sample characteristics and timing of PC discussion and initiation. Of 1120 identified citations, 16 articles met the inclusion criteria and comprised the study cohort. Overall, 54.5% of pediatric oncology patients received any palliative service prior to death. Data revealed PC discussion does not occur until late in the illness trajectory, and PC does not begin until close to time of death. Despite efforts to spur earlier initiation, many pediatric oncology patients do not receive any palliative care service, and those who do, predominantly receive it near the time of death. Delays occur both at first PC discussion and at PC initiation. Efforts for early PC integration must recognize the complex determinants of PC utilization across the illness timeline.
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