Abstract
Children with medical complexity experience frequent hospitalizations and pose a unique challenge for the pediatric hospitalist and their healthcare team. Pediatric hospitalists are ideally positioned to champion improved care coordination for CMC and to address the areas of need in clinical practice, quality improvement and research. Lessons learned from programs who were Healthcare Innovation Award recipients from Center for Medicare and Medicaid Innovation that were aimed at improving care for this population are presented. We focused on care coordination activities implemented during hospitalization. Through a series of meetings with the participating programs, we identified common themes across awarded programs. Programs described key aspects of care coordination during the hospital stay, beginning on admission (multidisciplinary team goal setting, family partnership and action planning), through hospitalization (integrating outpatient and inpatient care), as well as during and after discharge (linking to community-based systems and supports, expanding the transition concept). Finally, we present actionable steps for inpatient providers seeking to improve care for this patient population at the time of hospitalization.
Despite various attempts at restructuring the health care system and health policy reforms over the last few decades, US health expenditures continue to grow. To help address rising costs, in 2012, the Center for Medicare and Medicaid Innovation (CMMI) introduced Health Care Innovation Awards (HCIAs) allotting funding for health systems to introduce more cost-effective models of care while improving patient outcomes.1 Award recipients included pediatric health care teams, many of which introduced new care coordination programs in which members aimed to improve the care for children with medical complexity (CMC). We set out to describe the hospital-focused care coordination interventions implemented across a convenience sample of these programs.
Hospital care consistently accounts for >40% of total annual child health care costs in the United States and is a leading factor in the growth of pediatric health spending.2–6 Approximately half of inpatient admissions, and the majority of hospital care costs, are associated with chronic conditions.7 Hospital care costs are especially staggering for CMC, a population of children defined as having expensive, complex, and chronic medical conditions that lead to (1) functional limitations; (2) substantial health service needs to maintain health, including numerous clinicians, medications, equipment, therapies, and surgeries; and (3) high health resource use.6 In 2006, CMC accounted for 10% of all admissions, 26% of all bed days, and 41% of all charges within all US hospitals, and in 2011, CMC accounted for 34% of all health care spending for children with Medicaid, with health care spending for all CMC reaching $50 to 100 billion annually.2,6
CMC pose a challenge for the pediatric hospitalist and the health care system because of the complexity of their care, the multiple consultants and settings involved, and sometimes the lack of an established medical home. Although CMC experience frequent hospitalizations, and families therefore have substantial hospital experience, the event is almost always a period of crisis and instability.8,9 At times, an illness can lead to a permanent resetting in the child’s “baseline,” a new normal to which families must adjust. In addition to unique inpatient care needs, families of CMC experience higher unmet social and financial needs that in part contribute to high rates of readmissions.4,10,11 Direct and indirect costs can produce financial strain even for families with adequate insurance coverage.11,12
Hospitalization and the events leading up to the hospitalization are an opportunity to reassess the status of communication across the child’s health care team, unmet child and family needs, social determinants of health, and broader goals of care. Because several teams work with a single hospitalized patient to address their comprehensive set of health and wellness needs, care coordination is crucial to address the needs of pediatric populations and CMC with efficiency, efficacy, and quality.13–16 Although specific definitions of care coordination vary, the practical definition we use is a “patient- and family-centered, assessment-driven, team-based activity designed to meet the needs of children and youth while enhancing the capabilities of families.”17 Until recently, much of the published research on pediatric care coordination models revolved around ambulatory settings, with limited recommendations for inpatient providers. We sought to translate lessons learned from HCIAs to actionable steps for inpatient providers to improve care for CMC within the hospital. We propose the application of care coordination principles to improve patient outcomes, reduce adverse events, and repeat hospitalizations.
HCIA Learning Methods
In 2012 and again in 2014, the CMMI granted cooperative agreements through the HCIA. These awards funded public and private organizations across the county to implement new ideas and projects that would transform health care systems to achieve better health and lower costs to people enrolled in Medicare, Medicaid, and Children's Health Insurance Program, particularly those with the highest health care needs.1 HCIA round 1 awardees focused mostly on changes for Medicare beneficiaries, although there were a few pediatric awardees. Round 2 funding attempted to broaden the CMMI’s scope by targeting specific populations and clinicians, including those caring for children. As a result, in the second round, one-quarter of the awards and funding were for pediatric-based models. To support these awardees as they approached care delivery transformation and payment reform in Medicaid, a pediatric learning collaborative was formed. For 6 years, from 2012 to 2018, 9 awardees representing 21 hospital or health systems from both rounds of HCIAs joined together in monthly telephone consultations as well as 7 in-person meetings to discuss challenges, share learnings, and evaluate outcomes.
In this article, a convenience sample of exemplars from these pediatric programs is presented, with a focus on activities that enhanced coordination during an inpatient stay. These programs were selected from the broader group during the learning collaborative as being illustrative of the concepts described in this article and do not significantly differ in characteristics of care coordination from the other pediatric programs awarded. The varied model and eligibility criteria used by these sample programs are described in Table 1. Although the lessons learned presented in this article are not exhaustive of all care coordination interventions implemented during the award periods, they provide a representative set to inform future initiatives.
Program Descriptions
Care Coordination Interventions
Care coordination is a valuable mechanism to tie together disconnected health services into a seamless effort that meets children’s health needs more efficiently and effectively. Care coordination teams address unmet needs through identification of needs and strengths in families and connecting them with community supports, ensuring information transfer between agencies and providers, following-up with caregivers post discharge, monitoring for complications, and maintaining communication among the care team. Programs included the following characteristics in their care coordination interventions:
• team-based and interdisciplinary, such that patients receive a comprehensive set of services, organized into a shared plan of care, engaging all providers across the continuum of care as well as primary and specialty care;
• variation in intensity according to patient needs so that more coordination resources and time are allocated to the highest-need patients;
• proactive, with care teams anticipating challenges and managing patient needs before acute situations arise, to the extent possible;
• longitudinal, with a focus on patients’ health and wellness needs over time;
• comprehensive, ensuring that a patient’s health and wellness are seen holistically, including a patient’s primary, specialty, behavioral, and social needs;
• consideration of social determinants and links to community resources;
• family-centered, so that families are partners in aligning their goals with their needs;
• promotion of self-care skills and independence; and
• provision of support during transitions, including between caregivers, settings, and levels of care.
Key Hospital-Focused Interventions
Programs intended to improve hospitalization outcomes through the care coordination strategies are summarized in Table 2. Although the particular methods used varied according to the needs and resources specific to the health system, commonalities included a focus on enhancing communication and greater inclusion of providers across settings of care.
Care Coordination Interventions
Program members created methods to notify care coordinators of admission to the hospital. Some notifications happened automatically by using technology, and others included a manual review process to identify at-risk patients daily. It was more challenging, and in some cases not possible, to obtain admission information for patients outside their own hospital systems. To address this, some health care systems used third-party vendor applications allowing both families and providers to flag the care coordination team of the hospital admission. However, they reported poor use by health care teams when the application was outside the regular workflow.
Program members also created processes to include the outpatient care coordination team into the management of the ongoing hospital stay. Because common indicators of a healthy baseline (eg, vital signs) can be unique for a child with medical complexity, inclusion of the care teams who had an ongoing relationship with the patient allowed for greater understanding of the patient’s individual needs and past responses to treatments. Program members established communication across the patient’s care team through both documentation and in-person meetings to enhance continuity of care. They also experienced more efficient and individualized discharge planning by incorporating handoffs between the outpatient and inpatient teams at the time of admission and end of inpatient stay.
The challenge that inpatient hospitalization presents to families was recognized, and many programs included family advisors, surveys, or consultation methods to understand how proposed care coordination interventions could decrease the burden and enhance support of caregivers during this critical period. Care teams identified discharge planning from the beginning of hospitalization as key to successful transition from hospital to home. Programs relied on the outpatient care coordination team for early goal setting with family and caregivers (even before hospitalization when possible) as well as specifying when management with community-based services will be appropriate. Within each program, consideration was given to the individual needs of the child and family, and the communication process often included direct participation of the family through rounding or other interactions with the care team.
Discussion and Recommendations
The collective experience from HCIA programs yielded a number of actionable recommendations, and areas for future research, regarding how to integrate care coordination principles into inpatient care for CMC. In settings with formal complex care programs, these recommendations can be viewed as guidance for hospitalists to work as effective partners and take advantage of those structures. In settings without formal complex care programs, these recommendations can be viewed as opportunities for hospitalists to inject more care coordination into routine clinical services delivered to CMC.
• Family partnership. Families bring a unique body of knowledge to help inform shared decision-making during hospitalization. Families of CMC have described their desire for maintaining a delicate balance between respect for their role as active caregiver and decision-maker while also being in need of care themselves.18 Parents have also articulated the importance of bolstering self-efficacy before discharge, such as through written instructions with contingency plans, opportunities to practice home care skills, and normalization of routines.19–21 Further research is needed to evaluate effective and family-centered tools to guide hospitalists’ communication about complex health information with families of CMC.
• Goal setting. Establishing meaningful, transparent, family-centered goals for hospitalization with the child’s family and care team has a number of potential benefits. By jointly agreeing on the level of health expected by discharge early during hospitalization, as well as the level of care that the family can realistically manage at home, hospitalists can better understand when days in the hospital might be avoidable because care is ready to be transitioned back to the family and outpatient team.21 Some hospitalizations are triggered by undifferentiated or vague yet troubling symptoms for which families and providers simply need to expedite workup or obtain more-aggressive symptom control. The hospitalization may also provide a stimulus for reviewing and revising existing goals. Revision of existing goals even before hospitalization facilitates managing everyone’s expectations (eg, hospitalization may not reasonably be expected to fix a problem or uncover a root cause). At times, this can decrease pressure for excessive testing or treatment. Finally, concerning hospitalization patterns also provide an opportunity to either set or revisit advanced care planning or palliative care goals.22
• Action planning. Chronic disease exacerbations and social challenges can precipitate hospitalizations for CMC.23 Action plans and postdischarge coaching are strategies that might reduce future hospitalization risk, as suggested in early evidence.24,25 Asthma action planning is one possible framework that hospital-based providers could use to help families predict, evaluate, and respond to signs of disease flares. Hospitalization provides an opportunity for hospitalists to partner with families to tailor an action plan directed toward the triggers of the current and recent admissions.
• Population health. Hospitalists are anticipated to face increasing pressure to see their patients through a “population lens” as payment models pivot toward value.26,27 Moreover, payers and health systems often focus on high-risk populations like CMC to drive efficiencies and cost savings. Therefore, bringing population management strategies into hospital care is one potential avenue to improve both child and family outcomes and systems efficiency. Hospital medicine and complex care leaders can investigate how registries, quality measurement, predictive analytics, and addressing social determinants of health can influence longitudinal care for CMC because these patients experience frequent hospitalizations. Inpatient providers might consider how medical home principles can be applied to inpatient care (eg, is continuity with the inpatient team a possibility among children with multiple hospitalizations, and are care coordination actions coordinated across different specialty groups?). Promising “inpatient complex care models” have been described in recent years and may serve as early examples.28,29
• Integrating outpatient and inpatient care. One aspiration of integrated care is that hospitalization is an extension of a single health care experience rather than a disconnected encounter.30,31 Active participation by outpatient providers during acute hospitalization can help bridge care across these settings but is often not available.29 Hospitalists can begin to better integrate care by first explicitly identifying key members of a child’s longitudinal care team and prioritizing collaboration with these individuals. Developing comanagement agreements in which roles and responsibilities are defined is a potential approach that hospitalists could use to effectively partner with complex care clinicians and outpatient providers who are closely involved during hospitalization.32 Other programs have included outpatient providers as part of the rounding team to help facilitate better communication and coordination.
• Linking to community-based systems and supports. Community-based services (eg, long-term support, school systems, Title V programs, etc) are critical to the health and wellbeing of CMC and their families33; however, these systems are often poorly understood by hospital-based providers. Tools developed for hospitalists are needed to demystify the common community-based care coordination supports used by CMC and mechanisms for hospitalists to efficiently identify and communicate with these services. The value in time investment for hospitalists is that these supports frequently address nonclinical aspects of care that contribute to hospitalization, rehospitalization, and excess hospital days (eg, accessing durable medical equipment, home nursing, respite, and addressing social determinants of health, among others).21,34–36
• Expanding transition concept. CMC experience numerous transitions: in and out of the hospital, across care settings, into adult care, and more. Although hospital-to-home transitions have received the most attention, each of these transitions represents risk and opportunity to influence CMC health.21,25,30 Hospitalists are ideally positioned to champion development of interventions in this area by identifying all current care settings for CMC and aid interdisciplinary communication across teams. For CMC approaching adulthood, when appropriate, new providers can be introduced during the hospitalization. In future research and quality improvement work, hospitalists should seek broader conceptualizations of transition for CMC.
Limitations and Conclusions
The experiences of the programs presented in this article highlight opportunities to provide more integrated, family-centered care for CMC through innovative care coordination activities during the hospital stay. Our recommendations are provided for consideration and may not be comprehensive of the experience of the many children’s hospitals engaging in care coordination efforts. Because we interviewed a convenience sample of programs funded by CMMI, it is possible that some themes and strategies may not have been captured. Additionally, we highlight strategies implemented at 4 academic centers that may possess resources beyond those of community hospitals. More work is also needed to evaluate the impact these care coordination interventions had on key outcome measures. The ability for programs to sustain interventions post grant was largely influenced by the payment and reimbursement mechanisms available in their state and region. Further financial analysis on the costs and benefits of these care coordination interventions for CMC would provide insight on how payment models can be used to support coordinated delivery of care by hospitalists and outpatient teams. Nevertheless, we present valuable learning that we believe can benefit inpatient providers across a variety of settings.
Because CMC represent a growing and disproportionate share of pediatric hospital medicine, optimizing their health and wellbeing is relevant for all hospitalists.15 Although care coordination activities for CMC strive to deliver integrated care for patients even during hospitalization, opportunities for inpatient care to be connected to outpatient and community settings remain.29 Resolution of the immediate acute cause for hospitalization is necessary but not sufficient to ensure a safe and successful discharge to home.37 Little work has been published on mechanisms to connect inpatient and outpatient settings, and the lessons learned by these programs provide insight on key concepts and potential activities, which may improve care and decrease cost. It is our hope that consideration of the recommendations presented in this article result in small changes in hospitalists’ practice as well as further research into the possibilities for systemic changes.
Footnotes
FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.
FUNDING: Dr Martinez-Strengel is funded through Clinical and Translational Science Awards grant TL1 TR001864 from the National Center for Advancing Translational Science, a component of the National Institutes of Health. The programs described in this special article were supported in their learning and innovation efforts in part by Funding Opportunity Numbers CMS-1c1-12-0001 and 1C1CMS331335 from the Centers for Medicare and Medicaid Services and Centers for Medicare and Medicaid Innovation. The contents of this article are solely the responsibility of the authors and do not necessarily represent the official views of US Department of Health and Human Services or any of its agencies.
POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.
References
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