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Growing Evidence for Successful Care

Management in Children With

Medical Complexity

Mary L. Ehlenbach, MD, Ryan J. Coller, MD, MPH

The last decade has heralded strategies to identify the population of children with medical complexity (CMC),1–3 quantify the striking magnitude of CMC health care costs,2,4–7and document8–12and address8,12,13their unmet needs. Although dedicated programs designed to better coordinate CMC care (ie,“complex care”) have materialized rapidly,14the rate of program growth has outpaced the generation of evidence for their effectiveness. Observational and uncontrolled studies have consistently suggested that complex care may lower costs by reducing hospital use15–18; however, 2 randomized controlled trials have yielded mixed results.19,20The discrepancies in these randomized controlled trials introduce uncertainty about the anticipated cost savings from complex care programs around the country, whereas the array of distinct complex care program models creates ambiguity about how health systems and policymakers should promote implementation.

In this month’s issue ofPediatrics, Bergman et al21reportfindings from the Coordinating All Resources Effectively (CARE) learning collaborative, which sought to transform 10 children’s hospital complex care programs and 42 referring primary care pediatrician practices across the United States. Using the Institute for Healthcare Improvement’s Breakthrough Series Collaborative model,22local teams implemented 4 key change concepts:

(1) family-driven“dynamic care teams,” (2) shared plans of care, (3) access plans that included individualized contingency planning for acute concerns, and (4) patient registries for population management.

Between 2015 and 2017, sites enrolled a convenience sample of 8096 CMC (defined by Clinical Risk Group categories 5b–923). Using statistical process control and propensity-matched analyses, the authors observed significant reductions in hospital and emergency department use and corresponding reductions in annual total, inpatient, and emergency department spending (4.6%, 7.7%, and 11.6%, respectively) during the collaborative. Perhaps as expected,24,25 the cost in both groups decreased over the study period; however, the CARE group reductions were larger despite simultaneous increases in pharmacy and home health spending. CARE’s geographic reach and the

corresponding racial, ethnic, and cultural diversity of the CMC involved support the generalizability of these findings.

The painstaking efforts required for collaboration and data sharing across the CARE network not only are commendable but also advance the complex carefield by adding another link in the growing evidence chain for complex care programs and lower cost of CMC care. The pragmatic nature of this study makes its contribution particularly unique; Bergman et al21 demonstrate that“common sense”

Department of Pediatrics, School of Medicine and Public Health, University of Wisconsin–Madison, Madison, Wisconsin

Opinions expressed in these commentaries are those of the authors and not necessarily those of the American Academy of Pediatrics or its Committees.

DOI:https://doi.org/10.1542/peds.2019-3982 Accepted for publication Dec 18, 2019

Address correspondence to Ryan J. Coller, MD, MPH, Department of Pediatrics, School of Medicine and Public Health, University of Wisconsin–Madison, 600 Highland Ave, Madison, WI 53792. E-mail: rcoller@ pediatrics.wisc.edu

PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275).

Copyright © 2020 by the American Academy of Pediatrics

FINANCIAL DISCLOSURE:The authors have indicated they have nofinancial relationships relevant to this article to disclose.

FUNDING:No external funding.

POTENTIAL CONFLICT OF INTEREST:The authors have indicated they have no potential conflicts of interest to disclose.

COMPANION PAPER:A companion to this article can be found online at www.pediatrics.org/cgi/doi/10. 1542/peds.2020-2401.

To cite: Ehlenbach ML and Coller RJ. Growing Evidence for Successful Care Management in Children with Medical Complexity.Pediatrics. 2020; 145(4):e20193982

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actions may demonstrably decrease the total cost of care for CMC, afinding that apparently translates to both dedicated specialty programs and traditional primary care clinics. By embedding activities within a learning collaborative, clinicians retainedflexibility to operationalize the workflows for their local context. The creation and sharing of a summary of health conditions, a list of who to call when and for what, and step-by-step instructions to address acute illness or changes from baseline presumably contributed to the successful management of CMC at home rather than in acute care settings.

It is worth noting that a learning collaborative design imposes some inherent scientific boundaries, and it will be valuable to view these results alongside those from the large multisite randomized controlled complex care trial currently underway in Ontario.26Despite a rigorous propensity-matching process in the CARE collaborative, observable baseline differences existed between eligible and enrolled (and enrolled and matched) CMC. This underscores the need for research to clarify motivators for complex care referral, enrollment, and retention. With respect to changes in acute care use, children likely respond to complex care models in different ways. By extension, what complex care achieves and how it achieves it for any given child is likely not uniform in cross section or over time.

To more completely understand the influence of interventions on the total cost of CMC care, future economic analyses should account for the cost of family-delivered care at home (person-hours) and determine if that changes with complex care enrollment; the analyses should also account for the potential effects on parent employment or workforce re-entry. Whether certain CARE sites achieved similar activities with more

efficiency could be an informative corollary in future work. Additionally, if CMC spend less time in the inpatient setting, understanding the effect on health systems may not be straightforward in that it can be both challenging for systems in traditional payment arrangements and beneficial in risk-sharing alternative payment models.

As the concept of value from complex care evolves, inclusion of noncost outcomes will be important. In their recent work, Bergman et al21take an important step on a long journey toward better understanding the nuances and tools needed to optimize health and intelligent spending for CMC. CARE continues to light the path forward for investigating strategies that have a positive impact on this important population.

ABBREVIATIONS

CARE: Coordinating All Resources Effectively

CMC: children with medical complexity

REFERENCES

1. Berry JG, Hall M, Cohen E, O’Neill M, Feudtner C. Ways to identify children with medical complexity and the importance of why.J Pediatr. 2015; 167(2):229–237

2. Neff JM, Sharp VL, Muldoon J, Graham J, Myers K. Profile of medical charges for children by health status group and severity level in a Washington state health plan.Health Serv Res. 2004;39(1): 73–89

3. Cohen E, Kuo DZ, Agrawal R, et al. Children with medical complexity: an emerging population for clinical and research initiatives.Pediatrics. 2011; 127(3):529–538

4. Cohen E, Berry JG, Camacho X, Anderson G, Wodchis W, Guttmann A. Patterns and costs of health care use of children with medical complexity.

Pediatrics. 2012;130(6). Available at:

www.pediatrics.org/cgi/content/full/ 130/6/e1463

5. Glendinning C, Kirk S, Guiffrida A, Lawton D. Technology-dependent children in the community: definitions, numbers and costs.Child Care Health Dev. 2001;27(4):321–334

6. Srivastava R, Downie J, Hall J, Reynolds G. Costs of children with medical complexity in Australian public hospitals.J Paediatr Child Health. 2016; 52(5):566–571

7. Simon TD, Berry J, Feudtner C, et al. Children with complex chronic conditions in inpatient hospital settings in the United States.Pediatrics. 2010; 126(4):647–655

8. Berry JG, Agrawal R, Kuo DZ, et al. Characteristics of hospitalizations for patients who use a structured clinical care program for children with medical complexity.J Pediatr. 2011;159(2):284–290

9. Kirk S, Glendinning C. Developing services to support parents caring for a technology-dependent child at home.

Child Care Health Dev. 2004;30(3): 209–218; discussion 219

10. Kuo DZ, Cohen E, Agrawal R, Berry JG, Casey PH. A national profile of caregiver challenges among more medically complex children with special health care needs.Arch Pediatr Adolesc Med. 2011;165(11):1020–1026

11. Kuo DZ, Houtrow AJ; Council on Children with Disabilities. Recognition and management of medical complexity.

Pediatrics. 2016;138(6):e20163021

12. Kuo DZ, Berry JG, Glader L, Morin MJ, Johaningsmeir S, Gordon J. Health services and health care needs fulfilled by structured clinical programs for children with medical complexity.

J Pediatr. 2016;169:291–296.e1

13. Pordes E, Gordon J, Sanders LM, Cohen E. Models of care delivery for children with medical complexity.Pediatrics. 2018;141(suppl 3):S212–S223

14. Cohen E, Berry JG, Sanders L, Schor EL, Wise PH. Status complexicus? The emergence of pediatric complex care.

Pediatrics. 2018;141(suppl 3):S202–S211

15. Gordon JB, Colby HH, Bartelt T, Jablonski D, Krauthoefer ML, Havens P. A tertiary care-primary care

partnership model for medically

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complex and fragile children and youth with special health care needs.Arch Pediatr Adolesc Med. 2007;161(10): 937–944

16. Casey PH, Lyle RE, Bird TM, et al. Effect of hospital-based comprehensive care clinic on health costs for Medicaid-insured medically complex children.

Arch Pediatr Adolesc Med. 2011;165(5): 392–398

17. Cohen E, Friedman JN, Mahant S, Adams S, Jovcevska V, Rosenbaum P. The impact of a complex care clinic in a children’s hospital.Child Care Health Dev. 2010;36(4):574–582

18. Cohen E, Lacombe-Duncan A, Spalding K, et al. Integrated complex care coordination for children with medical complexity: a mixed-methods evaluation of tertiary care-community

collaboration.BMC Health Serv Res. 2012;12:366

19. Simon TD, Whitlock KB, Haaland W, et al. Effectiveness of a comprehensive case management service for children with medical complexity.Pediatrics. 2017; 140(6):e20171641

20. Mosquera RA, Avritscher EB, Samuels CL, et al. Effect of an enhanced medical home on serious illness and cost of care among high-risk children with chronic illness: a randomized clinical trial.JAMA. 2014;312(24):2640–2648

21. Bergman D, Keller D, Kuo D, et al. Costs and utilization for children with medical complexity in a care management program.Pediatrics. 2020;145(4): e20192401

22. Kilo CM. A framework for collaborative improvement: lessons from the Institute for Healthcare Improvement’s Breakthrough Series.Qual Manag Health Care. 1998;6(4):1–13

23. Hughes JS, Averill RF, Eisenhandler J, et al. Clinical Risk Groups (CRGs): a classification system for risk-adjusted capitation-based payment and health care management.Med Care. 2004; 42(1):81–90

24. Agrawal R, Hall M, Cohen E, et al. Trends in health care spending for children in Medicaid with high resource use.

Pediatrics. 2016;138(4):e20160682

25. Peltz A, Hall M, Rubin DM, et al. Hospital utilization among children with the highest annual inpatient cost.

Pediatrics. 2016;137(2):e20151829

26. Orkin J, Chan CY, Fayed N, et al. Complex care for kids Ontario: protocol for a mixed-methods randomised controlled trial of a population-level care coordination initiative for children with medical complexity.BMJ Open. 2019;9(8):e028121

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DOI: 10.1542/peds.2019-3982 originally published online March 30, 2020;

2020;145;

Pediatrics

Mary L. Ehlenbach and Ryan J. Coller

Complexity

Growing Evidence for Successful Care Management in Children With Medical

Services

Updated Information &

http://pediatrics.aappublications.org/content/145/4/e20193982 including high resolution figures, can be found at:

References

http://pediatrics.aappublications.org/content/145/4/e20193982#BIBL This article cites 25 articles, 10 of which you can access for free at:

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at Viet Nam:AAP Sponsored on August 28, 2020

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DOI: 10.1542/peds.2019-3982 originally published online March 30, 2020;

2020;145;

Pediatrics

Mary L. Ehlenbach and Ryan J. Coller

Complexity

Growing Evidence for Successful Care Management in Children With Medical

http://pediatrics.aappublications.org/content/145/4/e20193982

located on the World Wide Web at:

The online version of this article, along with updated information and services, is

by the American Academy of Pediatrics. All rights reserved. Print ISSN: 1073-0397.

the American Academy of Pediatrics, 345 Park Avenue, Itasca, Illinois, 60143. Copyright © 2020 has been published continuously since 1948. Pediatrics is owned, published, and trademarked by Pediatrics is the official journal of the American Academy of Pediatrics. A monthly publication, it

at Viet Nam:AAP Sponsored on August 28, 2020

www.aappublications.org/news

References

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