Models of Care Delivery for Children With Medical Complexity

In most existing models of care for CMC, enhanced care coordination services are provided together with other supports. “Care coordination” in this context is a set of services that are provided by a defined team and are patient- and family-centered, assessment-driven, and designed to address the goals and meet the needs of the patient and family.¹⁰ In enhanced care coordination, continuity, familiarity, accessibility, partnership, and early crisis recognition are emphasized. It has been suggested that in an ideal care delivery model for CMC, the creation of proactive plans based on family and children goals is emphasized, the timely treatment of urgent acute health issues is enabled, multidisciplinary shared decision-making is facilitated, and a provider familiar with the child and/or family is involved to addresses comprehensive needs.¹¹ Enhanced care coordination services offered within existing models of care are highlighted in Table 1.

We have divided models into 3 broad categories: (1) primary care–centered (PCC) models, (2) consultative- or comanagement-centered (CC) models, and (3) episode-based (EB) models. The characteristics, advantages, and disadvantages of each model are described below and summarized in Table 2.

Within each of the main model categories, further variety exists. Programs differ in their location, payment systems, target populations, care team staff, and services offered. Variations are due to differences in local needs, the expertise of founding members, the preferences of stakeholders, (eg, patients, families, primary care practitioners, and hospitals), and available financial and/or institutional support. In some programs, both primary care and consultative services are provided. The wide heterogeneity of models is a reflection of the current lack of consensus on what constitutes the best practices within the emerging field of pediatric complex care and for the diverse needs of the CMC population.

In this article, we focus on models in which direct medical care for CMC is provided. Distinct from these models is a standalone care-manager model in which a nurse, a social worker, or a community navigator works as a representative of a hospital, county, government and/or nonprofit agency, or insurance company to provide care coordination services.^2,20,21 This type of care-manager model is common in the inpatient setting and is increasingly used in the outpatient setting.^21,22 The efficacy of agency-based care managers improves when they are integrated into primary care practices.²³ This standalone care-manager model has the advantage of the delegation of nonclinical, often time-intensive duties to staff who ideally have increased community insight, and connections are often less costly to the health care system than advanced medical providers.²⁰ A few evaluations of insurance care-manager programs have revealed cost savings and improved disease-specific outcomes for children with chronic conditions^24,25; however, there remains little evaluative literature on this model overall or specifically for CMC.

PCC models of care delivery for CMC encompass the concept of the American Academy of Pediatrics’ medical home. These models may be community- or tertiary care–based, with emphasis on the delivery of services that are continuous, coordinated, compassionate, and culturally appropriate through a primary care center.²⁶ Multiple health, policy, and nonprofit organizations champion care coordination through PCC models.^26,27 

PCC models build on the strength of long-standing relationships between primary care practices, families, and their local communities.²⁰ Because relationships between primary care teams and families may begin before the manifestations of a child’s illness, providers within PCC models are uniquely positioned to provide varying services as the needs of CMC and their families evolve. Additional advantages include the proximity to a patient’s home, an understanding of the local context and cultures, an ability to provide care for other family members, and functioning as a single location for comprehensive general and/or primary care and care coordination services.²⁰ 

Although often recommended as the ideal model, addressing the needs of this diverse and complex population presents challenges for primary care physicians (PCPs).²⁸ In a recent survey from the American Academy of Pediatrics of over 500 pediatricians, 40% agreed or strongly agreed that the medical home for children with complex or rare conditions should be located within a tertiary care specialty clinic.²⁹ Barriers to providing care noted by PCPs include high costs, poor reimbursement, the time needed to provide services, a lack of communication and coordination tools, inadequate knowledge to address complex acute illness, and limited personnel and community resources.^28,29 Providers within PCC models struggle with the delivery of comprehensive care in siloed health care systems. Fragmentation of care is a particular risk because many CMC rely on inpatient and subspecialty care for treatment and do not attend routine PCP follow-up.³⁰ The lack of patient contact compounded by poor communication across health care settings^6,31 (including incompatibility of electronic medical records) presents a major obstacle for comprehensive care delivery within PCC models.

New strategies to improve care delivery include the creation of “enhanced” PCC complex care programs dedicated to serving CMC and, often, their siblings. In many of these programs, resources and staff are centralized within a tertiary care center.^7,14,15,32 These programs are often based around a team model and staffed with providers from multiple disciplines, such as subspecialty physicians, general pediatricians, nurses, care coordinators, social workers, and dieticians. For community models with smaller panels of CMC patients, collaboration among practices, standardized coordination protocols, and shared resources improve care delivery.¹² Other interventions to provide comprehensive care include nonphysician care coordinators,³² telemedicine,³³ e-mail, external case managers,² increased accessibility to a primary provider,⁷ longer and more frequent clinic appointments,¹⁴ parental advisory groups,¹² and standardized care coordination quality improvement tools.¹³ 

CC models are defined here as models in which providers in subspecialty programs, or more general complex care programs at tertiary care centers, deliver care coordination services, often in partnership with PCPs. Distinct from PCC models, CC models are generally not a patient’s first entry point for access to health care and often do not include routine child care. Analogous to those of many palliative care programs, the efforts of CC models are commonly focused on care coordination services, goal-directed comanagement of medical issues, and acting as a bridge between the tertiary care center and the community.^8,17,34 In consultative models, recommendations regarding specific questions are typically provided, whereas comanagement models are engaged over a longer period of time, taking a more or less active role as dictated by needs. Long-established examples of the CC model are subspecialty programs structured around a single disease or type of technology assistance. Nondisease-specific models often staffed by generalists and located within tertiary care centers are becoming more prevalent.

Advantages stem from being part of a hospital system and the colocation of patients, resources, and care teams.²⁰ Providers in CC models are well positioned to care for CMC who have multiple complex chronic conditions, frequent hospitalizations, frequent subspecialties visits, rare diseases, and high levels of technology assistance. CC models may be especially important for families who need to access tertiary care services but live a distance away from the center or lack access to a PCP within the network. With a cohort of complex patients, providers in CC models are well positioned to improve efficiency, decrease cost, and negotiate with payers.

The consolidation of resources in 1 geographic center presents challenges. Because many children do not live near tertiary care centers or subspecialty care,³⁵ the centralization of resources and expertise in tertiary care centers leads to difficulties in the remote management of acute illness and communication with local support services. Given poor reimbursement for the care coordination activities at the core of the CC model, many programs rely on unstable and transient revenue sources such as extramural grants or hospital support. Funding constraints limit the capacity to care for all CMC within a system and drive many providers in CC models to rely on medical-based inclusion and exclusion criteria for enrollment. Such criteria inherently lead to the exclusion of some children (eg, those with primary mental health or social complexity) who also have many unmet needs and a potential for high health care use. Maintaining a steady workforce in a program focused solely on CMC can be a struggle because the work is time-consuming and emotionally challenging.

Those working within CC programs have developed solutions to address the challenges associated with the delivery of comanagement rather than primary care services when patients are being managed by multiple providers and/or teams. Risks of unclear patient ownership and diffusion of responsibility can be mitigated by personal and timely communication among care providers and the creation of accessible care plans in which provider- and family-specific responsibilities are assigned. Other tools to enhance communication and accessibility include home visits, telemedicine, e-mail, shared health care portals, and on-call services available for both families and other providers.³⁴ In 1 CC program, face-to-face services are delivered within a patient’s local community by holding weekly comanagement care coordination clinics staffed by a tertiary-care nurse practitioner and a community pediatrician.¹⁷ Partially in response to scarce resources, the providers within some CC models use a multilayered care team approach, matching skill sets with tasks, with nonphysicians providing many of the care coordination services, including direct communication between care teams.⁸ 

The common element of EB models are time- or location-limited interventions focused on providing medical management and care coordination for a specific illness episode or transitional period. During a discrete care episode, a child is often acutely or critically ill, and families are often most stressed. Examples of EB models include an inpatient service in which a small care team accustomed to treating complex conditions focuses on care of a targeted group of CMC,^36,37 transitional care homes where children live between hospitalization and home while their parents are educated on new medical equipment, and inpatient rehabilitation facilities.

Advantages stem from the ability of trained staff to deliver around-the-clock care when a child and family are most vulnerable. During hospitalizations, parents of CMC report a sense that they are being left alone to care for their children,³⁸ express fear for their children, have additional worries about absence from their other children and days missed from work, and face tough decisions about end-of life-care. A care team familiar with the family and child, included in many EB models, may help mitigate some of these negative feelings.³⁸ Inpatient CMC services are designed to focus on the chronic as well as acute needs of CMC during inpatient stays by improving care coordination and the transition into outpatient and/or community care.²⁰ The effects of new medications, treatments, and medical technologies are closely monitored in a given time period within the context of an EB model of care, which is of particular benefit for CMC, given the risk of medication interactions and unwanted side effects.

Disadvantages relate to the location and episodic nature of EB models. There is a risk that chronic needs are not addressed because more acute issues are prioritized. Increased hand-offs that are intrinsic to providing 24/7 care and inadequate communication with ambulatory care teams (eg, home nurses, schools, PCPs, outpatient subspecialists) place CMC at high risk for medical errors and gaps in care. Further discontinuity of care develops when the care coordination services a child receives during a specific episode of care are discontinued on discharge. There is limited ability to prevent illness exacerbation before hospitalization in these current EB models.

There is growing recognition among inpatient providers that to improve care for CMC, hospital staff may need to be involved in a child’s care beyond the acute hospitalization.³⁶ Those working within a few current complex care programs aim to bridge the gap between inpatient and outpatient care by providing services in both locations.⁸ Some programs have dedicated inpatient teams with small staffing numbers to provide continuity, whereas others have the outpatient providers rotate on and off inpatient service or provide consultations to address readmissions or prolonged stays. Structured hand-off tools³⁹ and CMC-specific discharge protocols⁴⁰ may improve the transition to ambulatory care. Transitional facilities, including rehabilitation institutions, also represent an emerging strategy to improve continuity as a child moves between care locations. These facilities are used when an acute illness is stabilized but a child cannot return to the community for a variety of reasons (eg, a need for parental education, a need for home nursing, or to finish a treatment course). CMC, and sometimes their families, can reside for a period of time at these locations while families acquire the skills to use technology or equipment, children receive developmental therapies, and care coordination needs are addressed.¹⁹ 

Regardless of the model, the authors of the majority of published evaluations of care delivery for CMC have shown an improvement in outcomes such as parental satisfaction, length of stay, unmet needs, and health care cost.¹⁵ However, these studies have several limitations, including inadequate control groups; small sample sizes; single-center, mostly hospital-based designs; and heterogeneous study populations. The authors of 1 of the few randomized control studies on model effectiveness, at a single tertiary care center in Houston, Texas, reported reduced costs and serious illness.⁷ The results of this study reveal the positive impact of a comprehensive care program for CMC; however, these outcomes may have been due to program- and population-specific factors that may not generalize to broader populations of CMC or to other settings.

To our knowledge, there is currently no comparative research on different models of care for CMC. In the adult complex care literature, the authors of a qualitative comparison of 18 successful adult complex care management programs identified 7 characteristics of highly effective programs.⁴¹ These foundational components with some pediatric adaptations are summarized in Table 3. The lack of a well-defined target population and standard outcomes for CMC make comparative investigations challenging. Even for relatively common CMC populations (eg, children with cerebral palsy who use a feeding tube) there are no well-defined outcome metrics. Disease-specific physiologic metrics (eg, hemoglobin A1c) are not applicable for CMC whose numbers and disease variety make similar population-based metrics impossible. Other common metrics, such as readmission rates, may not be reflective of the quality of care for CMC who have variable and often unpredictable disease courses and whose families may prefer to risk readmission so that their children can partake in specific events at home that contribute to their quality of life.

There is work on the national level to create evidence-based practice guidelines for models of care for CMC. The Centers for Medicare and Medicaid Services has awarded 6 Health Care Innovation Awards to a variety of models of care for CMC to determine scalable best practices in care delivery for CMC and a new payment structure.⁴² In addition, centers of excellence funded by the Centers for Medicare and Medicaid Services and the Agency for Healthcare Research Quality have focused on creating standardized outcomes, mainly in the form of validated surveys such as Quality of Care Measures for Children with Complex Needs.⁴³ The results of such surveys will help us better define what the child and family see as “value,” and these surveys are necessary next steps in comparative evaluation and for identifying which features of models of care for CMC are most impactful.

Despite ongoing efforts, several gaps in care are common across models. We highlight the following gaps: (1) the poor integration of medical and community services, especially regarding addressing social determinants of health; (2) a limited focus on mental and/or behavioral health care; (3) difficulties achieving smooth transitions to adult care; (4) a lack of sustainability strategies; and (5) inadequate support for family caregivers.

The integration of information and services from a variety of sources (eg, schools, recreation, the home, social services, or medical services) is important to families^44,45 but difficult to achieve through the current, mostly medically based, care models. Disparities in care for low-income, minority, and non-English–speaking families of children with special health care needs exist,^46,–48 and simply providing access to a family-centered source of care does not eliminate these disparities.⁴⁹ Relatively little is known about the most effective way to combat the impact of social disparities on the health of CMC. The integration of social workers in care teams and the development of novel technologies, such as a platform for communication between social and medical services,⁵⁰ may help bridge the gap between medical and community services in efforts to create the ideal “patient-centered medical neighborhood.”⁵¹ 

The rate of unmet mental health needs for CMC is 3 times that of children with special health care needs without complexity.³ Parents of CMC associate poor mental health with poor quality of life for their children.⁵² Despite the fact that care coordination services for children with disabilities improves access to mental health treatment,^53,54 few care delivery systems target CMC with primary mental health issues, and few models integrate mental health services. Ideally, the existing care coordination and multidisciplinary structure within models of care for CMC could be used to adapt tools used in primary care (eg, quick access to telephone pediatric psychiatrist consultations, colocation or in-house integration with behavioral health specialists, and school-based health care services)^55,–57 to address the mental health needs of CMC.

There is little support for families, patients, and providers, and there are few standards of practice for transitioning CMC from pediatric to adult health care. Difficulties associated with the transition to adult care noted by families include finding an adult provider who is knowledgeable or familiar with their child’s disease or disability, adjusting to the adult style of medicine, changing from a focus on the family to a focus on the patient, and leaving long-standing trusting relationships with current pediatric doctors.⁵⁸ Many pediatric providers, especially subspecialists, are reluctant to transition patients from pediatric care to an adult mode of care.⁵⁹ Few adult care providers are appropriately trained and/or interested in caring for complex childhood-onset disorders. Complex care programs may become the default providers for young adults with complexity, inadvertently widening the gap between pediatric and adult care services. One proposed transition model revolves around collaboration among pediatric subspecialists, adult medicine specialists, and adult PCPs to address health issues that arise with aging.⁶⁰ Ideal models of care for CMC include partnerships with adult medical providers and care teams to ensure the continuation of enhanced care coordination services and a structure for care transition.

High-quality care delivery for CMC is time-consuming and poorly reimbursed. Health care financing systems are anchored in the care of adults, especially those with costly and modifiable chronic conditions, with little attention to the special requirements of CMC. Remuneration is based largely on fees for face-to-face services and procedures. Consequently, the time spent on non–face-to-face care coordination activities, which are the backbone of most models of care for CMC, remains under- or unfunded. Recognizing this, some successful complex care programs are initially focused on a small target population with high resource use to curb costs and garner institutional support. In a few models of care, state Medicaid amendments for reimbursement are used. However, such amendments are rare, time-consuming, and difficult to achieve.⁶¹ Recruiting and retaining personnel is a challenge for many programs. Supporting the mental health of personnel who constantly care for chronically ill children who have unknown disease trajectories and high rates of early mortality is essential to prevent burnout.

CMC rely heavily on informal and unpaid caregiving by families. When compared with adults with complexity, CMC are less likely to receive home care or respite care.² The reliance on nonformal caregiving for children is likely due to the combination of family and provider preference for in-home care, increasing pressures to reduce length of stay and the scarcity of a skilled in-home professional workforce.^62,63 The effects on caregivers of providing these intensive in-home care and coordination services are significant. Despite efforts to provide support, a child’s enrollment in a model of care for CMC does not always improve a parent’s low quality of life or overall health.^64,65 Parents of CMC report increased stress, decreased sleep, lost revenue, unemployment, and resentment over having their time and energy absorbed by care coordination, administration, and advocacy activities.^5,66,67 Much of this work by families goes unnoticed, underappreciated, and unpaid.^66,68 As children spend less time in the hospital, there is likely a shunting of costs from the medical system to families. Families forgo thousands of dollars in earnings to provide medical care services for their children, and replacement of family-provided health care by a home health aide would cost $6400 per child with special health care needs.⁶⁹ An ideal care delivery system for CMC would partner with families to ease their financial, time, and emotional burden and provide caregiver support systems, such as increased in-home care, respite facilities, financial resources, and access to high-quality adult mental and physical health care.

We have described various categories of models of care for CMC, each with specific advantages and disadvantages, in which the aim is to improve quality of care and reduce cost for CMC. Given the importance of context (location, family resources, primary care provider preference, and access to tertiary care) on the delivery of care to families and children, there cannot be a “1-size-fits-all” model of care. Substantial challenges for current models exist, including financial sustainability and mechanisms to best support family caregivers. Ongoing integration of research and advocacy to develop standardized outcome metrics, enhance existing models of care, and evaluate care delivery systems is essential to ensure the delivery of high-value care for CMC.

CMC

children with medical complexity

EB

episode based

CC

consultative or comanagement centered

PCC

primary care centered

PCP

primary care physician

We thank Holly Owens for contributing her parental perspective, and we thank Tim Corden, MD, and Sarah Johaningsmeir, BA, at the Children’s Hospital of Wisconsin, Medical College of Wisconsin, for their editing of this article.