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Key Population Health Outcomes for Children with Medical Complexity: A Systematic Review
Elizabeth S Barnert1,2, Ryan J Coller3, Bergen B Nelson4
1Department of Pediatrics, David Geffen School of Medicine at UCLA, 10833 Le Conte Ave MDCC, Los Angeles, CA, 90095, USA. ebarnert@mednet.ucla.edu.
Insights
A summary measure of health for children with medical complexity (CMC) is needed. Current research focuses on healthcare access, family well-being, and child health, but lacks child mental health and routine promotion outcomes.
Area of Science:
- Pediatric Health Outcomes Research
- Health Services Research
- Complex Care Management
Background:
- A comprehensive health measure for children with medical complexity (CMC) is currently lacking.
- Existing population health approaches may not adequately apply to CMC.
- Understanding current outcome measurement is crucial for policy and program development.
Purpose of the Study:
- To systematically review the literature on health outcomes measured for CMC.
- To identify existing outcome domains and sub-domains for CMC.
- To inform the development of a summary health measure for CMC.
Main Methods:
- Systematic literature search of MEDLINE and PsycINFO.
- Inclusion of studies reporting any outcome for CMC.
- Iterative content analysis to categorize outcomes into domains and sub-domains.
Main Results:
- 517 articles were analyzed, revealing five distinct outcome domains and 24 sub-domains.
- Key domains include healthcare access/use (50%), family well-being (43%), child health (39%), healthcare quality (38%), and adaptive functioning (25%).
- Gaps identified in measuring routine child health promotion and child mental health outcomes.
Conclusions:
- Key health domains for CMC have been identified.
- Existing metrics require adaptation, and new tools are needed for comprehensive population health measurement in CMC.
- This framework can guide policies and programs to enhance care for CMC.
Introduction:
Despite the significant healthcare policy and program implications, a summary measure of health for children with medical complexity (CMC) has not been identified. It is unclear whether existing population health approaches apply to CMC. We conducted a systematic review of the existing peer-reviewed research literature on CMC to describe the health outcomes currently measured for CMC.
Methods:
We searched MEDLINE and PsycINFO by linking combinations of key words from three groups of concepts: (1) pediatric, (2) medical complexity, and (3) chronicity or severity. Study eligibility criteria were research studies including CMC with any outcome reported. Data on the outcomes were systematically extracted. Iterative content analysis organized outcomes into conceptual domains and sub-domains.
Results:
Our search yielded 3853 articles. After exclusion criteria were applied, 517 articles remained for data extraction. Five distinct outcome domains and twenty-four sub-domains emerged. Specifically, 50% of the articles studied healthcare access and use; 43% family well-being; 39% child health and well-being; 38% healthcare quality; and 25% adaptive functioning. Notably lacking were articles examining routine child health promotion as well as child mental health and outcomes related to family functioning.
Conclusions:
Key health domains for CMC exist. Adaptations of existing sets of metrics and additional tools are needed to fully represent and measure population health for CMC. This approach may guide policies and programs to improve care for CMC.
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