Key Population Health Outcomes for Children with Medical Complexity: A Systematic Review

• Published in: Maternal and child health journal Vol. 23; no. 9; pp. 1167 - 1176
• Main Authors: Barnert, Elizabeth S., Coller, Ryan J., Nelson, Bergen B., Thompson, Lindsey R., Tran, John, Chan, Vincent, Padilla, Cesar, Klitzner, Thomas S., Szilagyi, Moira, Chung, Paul J.
• Format: Journal Article
• Language: English
• Published: New York Springer US 01.09.2019; Springer; Springer Nature B.V
• Subjects: Biological complexity; Cancer; Child; Child & adolescent mental health; Child Health Services - standards; Child Health Services - statistics & numerical data; Child, Preschool; Children; Children & youth; Childrens health; Chronic illnesses; Content analysis; Families & family life; Gynecology; Health aspects; Health care; Health care policy; Health policy; Health promotion; Humans; Maternal & child health; Maternal and Child Health; Medicaid; Medical Subject Headings-MeSH; Medicine; Medicine & Public Health; Mental health; Outcome Assessment, Health Care - standards; Outcome Assessment, Health Care - statistics & numerical data; Pediatrics; Population; Population Economics; Population Surveillance - methods; Public Health; Quality of Health Care - standards; Quality of Health Care - statistics & numerical data; Quality of life; Review Paper; Rheumatology; Sociology; Studies; Systematic review; Systems Analysis; Well being; United States; Health outcomes; Complex chronic conditions; Children with special health care needs; Children with medical complexity; Population health
• ISSN: 1092-7875; 1573-6628; 1573-6628
• DOI: 10.1007/s10995-019-02752-1

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.