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

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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.

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Acknowledgements

The study was funded by the Lucile Packard Foundation for Children’s Health and by the UCLA Children’s Discovery and Innovation Institute. Thank you to Dr. Edward Schor for his visionary and conceptual contributions to the project, to Adrianna Saenz for her strategic and conceptual input, and to Abigail Breck for her assistance with manuscript presentation. The authors declare that they have no conflict of interest.

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Authors and Affiliations

  1. Department of Pediatrics, David Geffen School of Medicine at UCLA, 10833 Le Conte Ave MDCC, Los Angeles, CA, 90095, USA

    Elizabeth S. Barnert, Lindsey R. Thompson, John Tran, Vincent Chan, Cesar Padilla, Thomas S. Klitzner, Moira Szilagyi & Paul J. Chung

  2. Children’s Discovery & Innovation Institute, UCLA Mattel Children’s Hospital, 10833 Le Conte Avenue, 12-311 MDCC, Los Angeles, CA, 90095, USA

    Elizabeth S. Barnert, Lindsey R. Thompson, Cesar Padilla, Thomas S. Klitzner & Moira Szilagyi

  3. Department of Pediatrics, University of Wisconsin-Madison, Office H4/410 CSC, 600 Highland Ave, Madison, WI, 53792, USA

    Ryan J. Coller

  4. Children’s Hospital of Richmond at VCU, 1000 East Broad Street, Richmond, VA, 23298, USA

    Bergen B. Nelson

  5. Eck Institute for Global Health, University of Notre Dame, Notre Dame, IN, 46556, USA

    Cesar Padilla

  6. W. P. Carey School of Business, Arizona State University, Business Administration, 300 E Lemon St., Tempe, AZ, 85287, USA

    Cesar Padilla

  7. RAND Health, RAND Corporation, 1776 Main Street, Santa Monica, CA, 90401, USA

    Paul J. Chung

  8. Department of Health Policy & Management, UCLA Fielding School of Public Health, 650 Charles Young Dr. S., 31-269 CHS Box 951772, Los Angeles, CA, 90095, USA

    Paul J. Chung

  9. Department of Health Systems Science, Kaiser Permanente School of Medicine, 98 South Los Robles Ave., Pasadena, CA, 91101, USA

    Paul J. Chung

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  1. Elizabeth S. Barnert
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Correspondence to Elizabeth S. Barnert.

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Barnert, E.S., Coller, R.J., Nelson, B.B. et al. Key Population Health Outcomes for Children with Medical Complexity: A Systematic Review. Matern Child Health J 23, 1167–1176 (2019). https://doi.org/10.1007/s10995-019-02752-1

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