Building Systems That Work for Children With Complex Health Care Needs: Editor’s Note

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PEDIATRICS Volume 141 , number s3 , March 2018 :e 20171284

SUPPLEMENT ARTICLE

Building Systems That Work for

Children With Complex Health

Care Needs: Editor

’

s Note

Rishi Agrawal, MD, MPH, a, b_{Christopher Stille, MD, MPH}c

a_{Ann & Robert H. Lurie Children}_’_{s Hospital of Chicago, Chicago, Illinois;}b_{La Rabida Children}_’_{s Hospital, Chicago, Illinois; and}c_{Department of Pediatrics, School of Medicine, University of}

Colorado, Aurora, Colorado

DOI: https:// doi. org/ 10. 1542/ peds. 2017- 1284C

Accepted for publication Nov 3, 2017

Address correspondence to Rishi Agrawal, MD, MPH, Ann & Robert H. Lurie Children’s Hospital of Chicago, 225 E Chicago Ave, Chicago, IL 60611. E-mail: ragrawal@ luriechildrens.org

FINANCIAL DISCLOSURE: The authors have indicated they have no ﬁ nancial relationships relevant to this article to disclose.

FUNDING: No external funding.

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

We are pleased to present a supplement to Pediatrics entitled “Building Systems That Work for Children with Complex Health Care Needs.” These articles are based on a symposium sponsored by the Lucile Packard Foundation for Children’s Health, which gathered families, providers, payers, advocates, and policy makers to discuss the key issues facing children with medical complexity (CMC). Traditionally, systems design initiatives have been focused on children with special health care needs, defined as “those who have 1 or more chronic physical, developmental, behavioral, or emotional conditions and who also require health and related services of a type or amount beyond that required by children generally”1_{This conference is focused on CMC, a growing subpopulation}

of children with special health care needs whose care is singularly challenging to health systems. CMC are defined as those with severe chronic conditions, functional limitations, family-identified needs, and resource utilization. 2, 3

The symposium, conducted in December 2015 in Washington, District of Columbia, was an

intensive although short (1.5 days) gathering of experts and thought leaders in the field of pediatric complex care. Critical issues from the viewpoint of many experts and stakeholder groups were identified. Several broad themes emerged from the conference. 4_{First, the needs of CMC are}

insufficiently addressed in national health reform discussions, in which care of chronically ill adults is often emphasized. Second, there is an urgent need to focus on population management for CMC, appropriately assessing levels of service and coordination needs and appropriately allocating limited resources to provide services tailored to those needs in the most effective manner. Third, care planning and care coordination need to be family centered and focused on integration of care. Fourth, health systems need to promote self-management among CMC and their families across the spectrum of age and developmental ability. Fifth, models of team care, including comanagement

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PEDIATRICS Volume 141 , number s3 , March 2018 S193

among multiple team members, must be refined for CMC because they all receive multiple services across the continuum of care. Finally, new models of payment such as accountable care hold promise to incentivize improved care but need to be designed with the unique needs of CMC in mind because inadvertent conflicts often arise between child and family needs and system complexities. Attendees agreed that the session was just the first step in a large body of work to be done to further high-quality, family-centered care to best meet the needs of CMC. This supplement is an effort to capture the most important insights from the symposium and identify the next steps.

The authors of the articles begin with the most important perspective: that of families of CMC. Allshouse et al 5_{present how the perspective}

of those families on the front lines should inform systems development for their children. Individual health care encounters take a back seat to the tremendous system complexities families must master, and the benefits of appropriately financed strategies to implement team-based care are highlighted. The authors conclude that families must not just participate in system redesign efforts but help guide them.

Next, Cohen et al 6_{provide an}

overview of the forces driving a growing emphasis within clinical systems and health services research on CMC and explore their implications for pediatric health care systems that care for this population. They raise important questions about the relationship between this emphasis and how it might drive changes in practice and policy that benefit the health of CMC. The authors conclude that pediatric health systems must define populations of interest more clearly; incorporate components of care across inpatient, outpatient, and community delivery settings;

and measure outcomes more comprehensively, focusing on health care processes and outcomes as well as cost reduction.

From the standpoint of individual care models and processes, the supplement then dives deeply into key issues health systems must address to provide high-quality care to CMC. Pordes et al 7_review

different models of outpatient care and key considerations for program development to ensure that CMC have the benefits of a medical home regardless of the model in which care is delivered. The authors evaluate the merits of primary-care centered, comanagement, and episodic care models and conclude that ongoing collaboration among multiple stakeholders is necessary to further refine models of care that meet the needs of CMC. Kuo et al 8_{explore the foundational}

activity of care coordination that must exist in any model of care and what health systems must build to implement it effectively. The authors posit that effective systems of care coordination require appropriate infrastructure, leadership in design and implementation, use of coordination and training tools, and careful resource allocation. Finally, Lozano and Houtrow 9

detail how self-management should be promoted among CMC, recognizing the critical differences in appropriate self-management approaches between children and adults. The authors conclude that standardized approaches and tools, interdisciplinary engagement, and leveraged community resources are all essential to promote self-management.

The supplement then pivots to issues of law, ethics, and policy, all central to any system that enables appropriate care strategies for CMC. Perkins and Agrawal 10_{review the legal rights of}

CMC and the protections they afford children in the midst of changes in health financing that may affect

coverage of needed services. The authors conclude that advocacy is required by multiple stakeholders to ensure that legal protections of CMC are protected and enforced. Feudtner et al 11_{analyze ethical considerations}

involved as principles of population health, including risk stratification, are increasingly applied to policy decisions affecting care. The authors posit a framework for ethical evaluation of risk assessment and risk stratification programs to ensure that they meet the needs of children and families, not just health systems and payers, and avoid inadvertently exacerbating rather than mitigating risk. Finally, Langer et al 12_explore

the challenges and implications of a shift to value-based payment for this population, concluding that legislative advocacy is required to ensure appropriate value-based payments are appropriate for CMC.

Tremendous progress has been made in recent years in highlighting the needs of CMC and building a theoretical and empirical basis to guide health systems development. However, much work remains to be done. The articles in this supplement point to areas of opportunity for clinical quality improvement, research, systems integration, and policy development, and we hope that the insights presented will stimulate further progress in the years to come.

REFERENCES

1. McPherson M, Arango P, Fox H, et al. A new deﬁ nition of children with special health care needs. Pediatrics. 1998;102(1, pt 1):137–140

2. 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

ABBREVIATION

CMC: children with medical complexity

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3. Berry JG; Lucile Packard Foundation for Children’s Health. What children with medical complexity, their families, and healthcare providers deserve from an ideal healthcare system. 2015. Available at: www. lpfch. org/ publication/ what- children- medical- complexity- their- families- and- healthcare- providers- deserve- ideal. Accessed March 26, 2017

4. Olson S. Proceedings for the 2015

Symposium: Designing Systems That Work for Children With Complex Health Care Needs; December 7–8, 2015; Palo Alto, CA

5. Allshouse C, Comeau M, Rodgers R, Wells, N. Families of children with medical complexity: a view from the front lines. Pediatrics. 2018;141(Suppl 3):e20171284D

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

Pediatrics. 2018;141(Suppl 3):

e20171284E

7. Pordes E, Gordon J, Sanders LM, Cohen E. Models of care delivery for children with medical complexity.

Pediatrics. 2018;141(Suppl

3):e20171284F

8. Kuo DZ, McAllister JW, Rossignol L, Turchi RM, Stille CJ. Care coordination for children with medical

complexity: whose care is it, anyway?

Pediatrics. 2018;141(Suppl 3):

e20171284G

9. Lozano P, Houtrow A. Supporting self-management in children and adolescents with complex chronic

conditions. Pediatrics. 2018;141(Suppl 3):e20171284H

10. Perkins J, Agrawal R. Protecting rights of children with medical complexity in an era of spending reduction. Pediatrics. 2018;141(Suppl 3):e20171284I

11. Feudtner C, Schall T, Nathanson P, Berry J. Ethical framework for risk stratiﬁ cation and mitigation programs for children with medical complexity. Pediatrics. 2018;141(Suppl 3):e20171284J

12. Langer C, Antonelli R, Chamberlain C, Pan RJ, Keller D. Evolving federal and state health care policy: towards a more integrated and comprehensive care delivery system for children with medical complexity. Pediatrics. 2018;141(Suppl 3):e20171284K

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DOI: 10.1542/peds.2017-1284C

2018;141;S192

Pediatrics

Rishi Agrawal and Christopher Stille

Editor's Note

Building Systems That Work for Children With Complex Health Care Needs:

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DOI: 10.1542/peds.2017-1284C

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Rishi Agrawal and Christopher Stille

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