Pediatric Chronic Critical Illness: Reducing Excess Hospitalizations

Discussion

The number of children with medical complexity is increasing as medical advances reduce mortality from lethal conditions.¹⁴ The sickest of these children are chronically critically ill, with repeated and prolonged hospitalizations and dependence on technology for vital functions.¹⁵ Although illness severity is an explanation for many hospital days for children with CCI, we wondered what contribution there might be from other patient, family, and health system factors. Our intensive study of knowledgeable stakeholders from across the United States uncovered factors that these parents and professionals believe routinely trigger and prolong hospitalizations (Fig 2). Accordingly, we identify 5 high-yield areas that could be targeted for improvements: (1) a CCI inpatient-outpatient care model, (2) robust pediatric home nursing, (3) longitudinal care coordination, (4) family support, and (5) expanding “medical necessity” to account for care complexity.

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FIGURE 2

Contributors to excess hospitalizations in CCI: a conceptual model.

Whereas nearly 80% of adults with CCI die within 1 year of ICU admission,¹⁶ children with CCI commonly survive several ICU admissions and transfer back and forth between inpatient and outpatient care.¹⁷ Whether more facile transitions and fewer hospital days could be prioritized with an intentional CCI inpatient-outpatient care model deserves exploration. This model could facilitate transitions between care sites, perhaps by assigning 1 inpatient and 1 outpatient clinician leader for each child. This added layer of support for clinicians might avert unnecessary treatment escalations that occur when new clinicians are unfamiliar with the medical history and baseline condition of a child with CCI. Lead clinicians familiar with the child could integrate inpatient and outpatient ad hoc team members and subspecialty silos that accompany the complex, multiorgan system management of CCI. The inpatient leader could be, for instance, from the site where the child is typically admitted, such as a PICU nurse, who is the assigned leader for all CCI patients for the ICU. Stakeholders had variable perspectives about whether a pediatrician or subspecialist should be the outpatient leader. In a 2015 survey, approximately half of US pediatricians agreed that subspecialists may provide the best medical home for complex children.¹⁸ Others have suggested that complex care programs can augment the primary care model¹⁹; our data suggest that palliative care teams often fulfill this role. Whoever leads the inpatient-outpatient care model would likely benefit from targeted training, dedicated salary and administrative support, and expanded communication platforms (ie, electronic and video) to promote timely information exchange within and across care sites.²⁰ Many stakeholders felt a CCI care model should include physician home visits; data from other populations of pediatric and adult patients suggest that home visits after hospitalizations can promote successful home care.^21,22 The authors of a recent review of home visits offer strategies to address cost, reimbursement, and sustainability (for instance, by partnering with child welfare organizations or foundations or by tracking dollars saved because of reductions in emergency department visits).²³

Across regions, stakeholders reported that inadequate pediatric home nursing care increases hospital days because of missed medications and/or treatments, delayed detection of problems, and family exhaustion. Parents and professionals told us that lack of home nursing can also delay hospital discharge for weeks to months, especially in rural areas. Although minimal data about pediatric home nursing care exist, Berry et al²⁴ recently reported data from over 2 000 000 pediatric discharges in the US, demonstrating significant regional variability in home health services. The for-profit nature of many home health agencies may incentivize the larger population of adult patients, creating gaps in pediatric services. Expanded funding and eligibility for pediatric home nursing is a clear priority as we work to reduce excess hospital days by supporting families to provide more care at home.

Stakeholders agreed that dedicated longitudinal care coordination is indispensable for this population receiving services from so many providers and health systems. Despite its potential to reduce hospital days, care coordination is poorly funded, perhaps because of complicated cost-savings calculations for the expensive population with CCI.^25,26 Different approaches to care coordination were noted across regions. In a few, an interdisciplinary team (eg, a complex care team or palliative care team) provides both clinical care and care coordination. In others, families receive state- or insurance-sponsored case management, although with variable quality and access. Some parent stakeholders complained of having too many care coordinators (eg, one each from Medicaid and private insurance, the pediatrician, and the cardiologist; this eliminated the benefits of a centralized provider familiar with a child’s needs). The authors of a 2014 American Academy of Pediatrics Statement emphasized the need for “relational coordination” to intentionally coordinate service providers in addition to the actual services.²⁷ Encouragingly, the Advancing Care for Exceptional Kids Act proposes enhancements in care coordination within and across states and national data collection to track outcomes.²⁸ Examples of successfully advocating for care coordination outcomes aside from cost savings could be tracked and shared as models for building CCI resources.

Family support was described by every type of stakeholder as essential to reducing hospital days. Most daily care activities fall to the family, such as managing medications and/or medical equipment, therapeutic exercises, and care coordination that can span up to 20 hours per week for some families.²⁹ The physical, emotional, and financial burdens are significant; a recent study showed >50% of caretakers develop chronic illnesses including depression and arthritis.^30,31 Stakeholders worried that limited emotional and psychological resources compromise family caregiving and may increase hospitalizations for children with CCI. Stakeholders support greater access to short-term respite care, which is currently unavailable in some communities. Carter and Mandrell³² suggest the potential to expand pediatric respite models to include hospital volunteers, which is not unlike the current model for pediatric hospice. Stakeholders had variable opinions regarding long-term care and medical group homes; some saw these resources as crucial for families who cannot meet their children’s needs. It is clear that parent partners and family-centered outcomes should help guide pediatric CCI care reforms.

Finally, stakeholders noted that greater access to any of the above services depends on expansion of the criteria for medical necessity to account for daily care complexity. Medical necessity determinations assess an individual child’s need for services not available to all policyholders; eligibility is based on some combination of scientific evidence, therapeutic potential, and value. Stakeholders across regions struggled to access services for children without qualifying diagnoses but with substantial home care burdens. They suggest that some children with qualifying diagnoses but minimal care needs “use up” the quota for limited resources. Developmental variability within pediatrics is also relevant; infants may have different daily care needs from older children with similar diagnoses. The authors of a 2013 American Academy of Pediatrics Statement recognized that medical necessity standards are often derived from adult conditions and may not apply to children.³³ Others have demonstrated significant Medicaid variability in determining medical necessity across different states.³⁴ Medicaid standards are particularly relevant for children with CCI because they may seek Medicaid eligibility via a waiver for level of disability.³⁵ Strategies to better match pediatric policy benefits to individual children’s care should be evaluated.

Our study has limitations. The snowball sampling technique is nonrandom and relies on interpersonal relations; our findings will need to be confirmed in broader samples of professionals and parents with CCI experiences from across the United States. Some regions had more participants than others; this reflects variable density of clinicians caring for children with CCI. The limited number of each type of stakeholder in each region undermined reliable and anonymous subgroup analysis. It is possible, for example, that nurses providing clinical care have distinct perspectives about excess hospital days for children with CCI than do nurse coordinators; this deserves further evaluation. Despite concerted efforts, we were not able to reach parents in Washington or Mississippi to approach for study participation; both have large rural populations and few or no statewide parent organizations. Meaningful inclusion of parents in developing CCI care models and research protocols going forward will need to balance the value of family input with protections for this vulnerable population. Finally, the data presented here represent the perspectives of individuals with substantial experience with pediatric CCI; although valuable, the veracity and generalizability of these perspectives needs further exploration.