OBJECTIVES: The past 2 decades have seen an expanding pediatric population that is chronically critically ill: children with repeated and prolonged hospitalizations and ongoing dependence on technologies to sustain vital functions. Although illness complexity prompts many hospitalizations, our goal with this study was to explore modifiable patient, family, and health system contributions to excess hospital days for children with chronic critical illness (CCI).
METHODS: Semistructured interviews were conducted with 51 stakeholders known for their CCI expertise. Stakeholders were from 5 metropolitan areas and were either (1) interdisciplinary providers (inpatient and/or outpatient clinicians, home health providers, foster care affiliates, or policy professionals) or (2) parents of children with CCI. Interview transcripts were qualitatively analyzed for themes.
RESULTS: All stakeholders agreed that homelike settings are ideal care sites for children with CCI, yet in every region these children experience prolonged hospitalizations. The perceived causes of excess hospital days are (1) inadequate communication and coordination within health care teams and between clinicians and families, (2) widespread gaps in qualified pediatric home health services and durable medical equipment providers, (3) inconsistent parent support, and (4) policies that limit pediatric service eligibility, state-supported case management, and nonhospital care sites.
CONCLUSIONS: Despite an expanding pediatric population with CCI, we lack an intentional care model to minimize their hospitalizations. In this study, we generate several hypotheses for exploring the potential impact of expanded access to home nursing, robust care coordination, and family and clinician support to reduce hospital days for this population of high health care utilizers.
The past 2 decades have seen an expanding population that is chronically critically ill: children with repeated and prolonged hospitalizations and ongoing dependence on technologies to sustain vital functions.1 A unifying definition of pediatric chronic critical illness (CCI) that accommodates both infants and children has yet to be established, which undermines robust analysis of the needs and outcomes of children with CCI.2 Patients with CCI represent the sickest subgroup of children with medical complexity, and inferences about them can be drawn from data regarding those children with medical complexity who have the most serious outcomes. Data suggest that children with CCI are at risk for unscheduled ICU admissions,3 escalating inpatient and outpatient needs, and in-hospital mortality in excess of 20%.4 In addition, care for such children outside of the hospital involves substantial commitment from parents, with financial impacts on the entire family.5 Despite the growth of the pediatric population with CCI, research targeting the unique issues facing these patients, their families, and their clinicians lags behind research aimed at adult CCI.6–8
A unifying goal for families and clinicians is to sustain the best quality of life for as long as possible for these children. Although this is often best achieved in the child’s home, children with CCI spend extensive periods in hospitals.9–11 Although serious illness clearly prompts some hospitalizations, we lack clarity about other factors that might complicate hospital discharge planning, outpatient management, and home care. Such information is fundamental to relevant clinical and policy interventions for pediatric CCI. We conducted an exploratory study in which we interviewed key stakeholders from across the United States to investigate reasons for excess hospitalizations among infants and children with CCI.
Between December 2015 and March 2016, we interviewed parents and professional stakeholders who were English-speaking and either (1) professionals with extensive experience in pediatric CCI care realms (ie, hospital, outpatient, long-term care, home health care, hospice, foster care, or policy) or (2) parents of children with CCI. We defined children with CCI as “children with complex and chronic medical conditions who require repeated and prolonged ICU hospitalizations.”
A diverse group of professional stakeholders were recruited via purposive and snowball sampling. Snowball sampling is a nonprobability sampling approach that is useful for populations that do not form distinct groups, such as CCI professionals.12 We began with individuals known by the authors for their CCI expertise. In addition to agreeing to be interviewed, participants were asked to recommend other professionals who they knew personally and who had important CCI experiences. Study staff pursued those individuals for study participation, again requesting recommendations of other potential participants. Professional recruitment was continued until there was representation of participants with a diversity of roles related to CCI care. To maximize parent ability to decline participation, we did not use snowball methods to identify potential parent participants but instead recruited parents via publicly available websites, electronic lists, and advocacy groups. The Johns Hopkins School of Medicine Institutional Review Board approved this study; oral consent was obtained.
Stakeholders completed an audiotaped, semistructured interview; questions were drawn from literature regarding pediatric CCI and targeted (1) locally available pediatric CCI care sites, (2) barriers or facilitators to reducing hospital days for children with CCI, and (3) relevant social and/or economic policies. Questions were tailored to the stakeholder’s role (Supplemental Information).
We performed conventional content analysis on transcribed interviews, by systematically coding and classifying stakeholder responses into common themes.13 Authors individually reviewed survey questions and assigned codes to stakeholder responses and then met to review codes and jointly group codes into code families. Similar code families were combined into themes. One author (R.D.B.) used the master codebook to review all transcripts; coding discrepancies were resolved through discussion with the larger group.
Illustrative quotations are included below.
Fifty-one of 77 eligible stakeholders participated. Fourteen stakeholders did not respond to interview requests, 11 responded but were unavailable for an interview, and 1 withdrew partway through the study. Participants were most connected with local networks of CCI professionals, which spanned the following 5 metropolitan areas: Seattle, Washington; Houston, Texas; Jackson, Mississippi; Baltimore, Maryland; and Philadelphia, Pennsylvania. We first characterized stakeholders by their educational and/or training background (Table 1). Because many stakeholders had multiple current and/or previous roles that were relevant to pediatric CCI, Fig 1 depicts the scope of all participant perspectives.
We first asked stakeholders to describe their comfort with local nonhospital sites of care for infants and children with CCI. All stakeholders felt that a home environment is ideal for children with CCI, whether a family home, foster home, or medical group home. Home environments are perceived to promote medical stability via individualized care and reduced exposure to infection. Home environments can also mitigate developmental risks of CCI via consistent relationships with caregivers and engagement in school and education as well as outpatient therapies. Stakeholders had various opinions about other nonhospital care sites. The disadvantages of long-term care facilities and subacute institutions were noted to be patient cohorts of dissimilar ages and medical needs, separation of children from families, inadequate developmental support, and inconsistent quality.
It’s hard to imagine that developmental stimulation is as good as it would be anywhere else. If they go to a chronic care facility and have a lot of technology or less ability to interact, they’re not going to get as much interaction as another kid who is less technology dependent or who has a better ability to interact. People are going to go and play with that baby rather than the one who has limited ability. It might be just as important for the one with limited ability to have that interaction.
State 3, physician
Medical group homes were perceived to provide more individualized care for small cohorts in a homelike setting that can facilitate relationships; stakeholders worried about variable staff training, supervision, and regulatory oversight. Although widely available in some regions, medical group homes are nonexistent in others. Not all medical group homes can accommodate complex pediatric CCI care.
Based on patients that I have worked with, there are times when it may be beneficial to have the availability of medical group homes just because the family cannot care for you. They don’t have a stable home. They don’t have space for all the equipment that would need to come home. Just their living arrangement is not suitable for what needs to happen. My only caution about it is that sometimes when we put things like that into place, we go overboard and then we think everybody needs to be there and they can’t go home.
State 1, nurse/nurse practitioner (NP)
Reasons for Excess Hospitalizations in Pediatric CCI
Stakeholders described consistent reasons across regions for excess hospitalizations in pediatric CCI that fall into 4 domains related to the (1) child, (2) family, (3) clinicians, and (4) health care system (stakeholder quotations in Table 2).
Illness complexity and severity clearly drive many pediatric CCI hospital days; these children are so tenuous at baseline that each exacerbation increases the risk for acute death. Stakeholders noted that respiratory conditions often preclude home care or even non-ICU care because of the need for assisted ventilation and related technologies. Infections both prompt and prolong hospitalizations, even when minor, by disrupting the fragile physiologic equilibrium of a child with CCI. It can be difficult to assess whether a child’s condition will recover completely after an exacerbation or is the “new baseline.” This can delay discharge and complicate preparations for intensified home care.
Home care demands for children with CCI can be substantial. Parents without anyone to share physical and emotional caretaking and those who cannot access respite care may be challenged to provide the care that must occur for their child to be at home. Social context is key, including competing sibling needs and transportation barriers. Parent training is essential to keeping children with CCI out of the hospital, although stakeholders were clear that minimal formal education does not preclude parent training. Family training must be longitudinal because these children have progressive needs. Along with learning daily care, parents must learn to navigate the system to secure services and resources. Sometimes the “best” care site for a child may not be the best for their family, resulting in competing needs.
Stakeholders concurred that many clinicians are nervous about caring for children with CCI. In the outpatient setting, this is compounded by insufficient time and reimbursement. Outpatient pediatricians may lack experience managing the complex medications and technologies, and may quickly refer to emergency departments. Once in emergency departments, children with CCI are typically admitted because their complexity also overwhelms emergency clinicians. Inpatient clinicians often lack familiarity with a child’s baseline condition, which may prompt unnecessary treatment escalation. Inpatient clinicians commonly initiate technologies, medications, or specialists that complicate or preclude discharge and home care. Parents described that inpatient clinicians may overlook parents’ expertise with their child’s condition and/or care, leading to treatment complications.
Health System Factors
Qualified and reliable pediatric home nursing was deemed partially or totally unavailable in every region. Stakeholders believe that for-profit home nursing and medical equipment companies avoid the pediatric market. Gaps in home medical equipment supplies prompt families to use equipment in nonapproved ways, increasing infections and hospitalizations. Insufficient medical group homes and long-term care facilities also delay discharge. Access to these services is further undermined by ambiguity about whether CCI-related problems are “qualifying diagnoses.” Reimbursement structures often prohibit the planning and coordination that can reduce hospital days. Dedicated discharge planning staff, palliative care teams, and complex care teams facilitate discharge but are rarely supported in hospital budgets. Ambiguity about whether adolescents with CCI should receive pediatric versus adult services is another barrier.
Communication, Coordination, and Continuity: Essential Scaffolding for CCI Care
Because children with CCI usually have multisystem diseases, their medical care comes from many individual providers with different locales, schedules, medical records, or priorities. Communication, coordination, and continuity were cited by all stakeholder groups as fundamental to reducing hospital days for these children (stakeholder quotations in Table 3).
Inadequate communication within the medical team and between the team and family increases hospital days. Clinicians often lack formal communication networks that bridge the care sites of a child with CCI (eg, although a home health nurse regularly interacts with the family, her concerns don’t reach the inpatient cardiologist). Good communication was described as timely and face to face or by phone; parents praised clinicians who could be reached directly. Stakeholders advocated incentives for time to be dedicated to patient care discussions and seek improvements for documenting and sharing important discussions between care sites.
Coordination of care is challenging when a child receives separate services from separate providers. Stakeholders noted that medical “silos” impede integrated care for children with CCI. Even within 1 hospital, interdisciplinary clinicians (eg, nutritionists, child life specialists) commonly cover multiple units and are unavailable for daily rounds. Children often transfer between different units during a hospitalization (eg, NICU to PICU) that have different approaches to medical management and discharge planning. Inpatient clinicians rarely have processes to coordinate with all of a child’s outpatient care sites, including school. Although outpatient medical homes are designed to coordinate care, inadequate reimbursement and support undermine this promise. Palliative care teams and state-supported case management, where available, often help. Overall, families report that care coordination falls to them.
Continuity of clinicians can bridge the above gaps in communication and coordination, offering longitudinal knowledge of care goals. Yet this continuity is often lacking; stakeholders describe how inpatient management plans for these children change weekly with rotating teams. Strategies thought to improve continuity of clinicians include the medical home, inpatient primary nurses, palliative care teams, and dedicated inpatient-outpatient transition services.
Policies Shaping Care for Pediatric CCI
Stakeholders described how various national, state, and local policies can impact hospital days for pediatric CCI (stakeholder quotations in Table 4). Stakeholders described how variability between insurance companies creates local care disparities. Several expressed frustration at policies that solely use diagnoses to determine service eligibility instead of a child’s care complexity. This means that children without qualifying diagnoses but with intense daily care burdens cannot access home nursing support or case management services.
Stakeholders worried that the movement toward deinstitutionalization has reduced or eliminated chronic care facilities. One result is that some children who were once eligible for these facilities now “live” in acute care hospitals for months to years. Regional availability of medical foster homes also limits sites for some children. Stakeholders described a tension between adequate chronic care site quality and accessibility for children with CCI.
Policies that prioritize tertiary over primary care were noted to divert resources from home health and outpatient care, undermining transition from the hospital. Others cited that litigation concerns prevent some clinicians from accepting children with complex conditions and poor prognoses.
Multiple stakeholders admitted knowing little about policies relevant to pediatric CCI or worried that they might have misperceptions of actual policies. Several stakeholders agreed that national and local policies only work if families know what can be accessed and if there are processes for accountability.
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.
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.
Without concerted attention to improving care coordination and delivery for pediatric CCI, increasing numbers of children will have prolonged hospitalizations, potentially missing valuable time at home and at great cost to their families and the medical system. The care of these children must integrate many separate but interdependent systems; thus, the potential solutions that we highlight in this article also require coordinated changes at the clinical, social services, and policy levels. Intentional care models for pediatric CCI have the potential to streamline care for these children, easing burdens for families, clinicians, and health care systems. Targeted interventions to decrease unnecessary hospital days, facilitate transitions between inpatient and outpatient care, build home care capacity, and increase family and clinician support are critical steps in this effort. Rigorous evaluation of these measures will help us understand whether all children with CCI, or subgroups of children with CCI, can have the greatest reductions in hospital days.
The authors thank the members of the CCI Working Group for their contributions to this work.
FINANCIAL DISCLOSURE: The authors have indicated they have no financial 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.
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- Copyright © 2017 by the American Academy of Pediatrics