Key Population Health Outcomes for Children with Medical Complexity: A Systematic Review
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REVIEW PAPER
Key Population Health Outcomes for Children with Medical Complexity: A Systematic Review Elizabeth S. Barnert1,2 · Ryan J. Coller3 · Bergen B. Nelson4 · Lindsey R. Thompson1,2 · John Tran1 · Vincent Chan1 · Cesar Padilla1,2,5,6 · Thomas S. Klitzner1,2 · Moira Szilagyi1,2 · Paul J. Chung1,7,8,9 Published online: 19 June 2019 © Springer Science+Business Media, LLC, part of Springer Nature 2019
Abstract 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. Keywords Children with medical complexity · Children with special health care needs · Complex chronic conditions · Health outcomes · Population health
Electronic supplementary material The online version of this article (https://doi.org/10.1007/s10995-019-02752-1) contains supplementary material, which is available to authorized users. * Elizabeth S. Barnert [email protected] 1
Department of Pediatrics, David Geffen School of Medicine at UCLA, 10833 Le Conte Ave MDCC, Los Angeles, CA 90095, USA
Children’s Discovery & Innovation Institute, UCLA Mattel Children’s Hospital, 10833 Le Conte Avenue, 12‑311 MDCC, Los Angeles, CA 90095, USA
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Department of Pediatrics, University of Wisconsin-Madison, Office H4/410 CSC, 600 Highland Ave, Madison, WI 53792, USA Children’s Hospital of Richmond at VCU, 1000 East Broad Street, Richmond, VA 23298, USA
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Eck Institute for Global Health, University of Notre Dame, Notre Dame, IN 46556, USA
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W. P. Carey School of Business, Arizona State University, Business Administration, 300 E Lem
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