Developing a Sustainable Care Delivery Payment Model for Children With Medical Complexity.

Children with medical complexity (CMC) are a small but growing population representing <1% of all children while accounting for >30% of childhood health care expenditure. Complex care is a relatively new discipline that has emerged with goals of improving CMC care, optimizing CMC family function, and reducing health care costs. The provision of care coordination services is a major function of most complex care programs. Unfortunately, most complex care programs struggle to achieve financial sustainability in a predominately fee-for-service environment. The article describes how 2 programs in Wisconsin worked with their state Medicaid payer through a Centers for Medicare and Medicaid Services Health Care Innovation Award to develop a sustainable complex care payment model, and the value the payment model is currently bringing to stakeholders. Key elements of the process included: Developing a relationship between payer and clinicians that allowed for an understanding of each's viewpoint, use of an accepted clinical service model, and an effort to measure cost of care for the service provided supported by time-study methodology.

National Research Agenda on Health Systems for Children and Youth With Special Health Care Needs.

Children and youth with special health care needs (CYSHCN) "have or are at increased risk for chronic physical, developmental, behavioral or emotional conditions and also require health and related services of a type or amount beyond that required by children generally." CYSHCN rely on health systems, which extend beyond traditional health care entities, to optimize their health and well-being. The current US health system is not fully equipped and functioning to meet the needs of CYSHCN. Recognizing this, the Maternal and Child Health Bureau and the US Health Resources and Services Administration established the Research Network on Health Systems for CYSHCN (CYSHCNet, http://www.cyshcnet.org). With input from >800 US stakeholders, CYSHCNet developed a national research agenda on health systems for CYSHCN designed to: 1) highlight important health system challenges faced by key stakeholders (ie, patients and families, health care providers, insurers, administrators, etc.); 2) organize research topics and goals to identify opportunities for improvement, to address challenges and to promote progress toward the ideal health system; and 3) provide a blueprint for health systems research ideas and studies that will guide CYSHCN investigators and other stakeholders going forward. We introduce the 6 research topics currently included in the research agenda-transition to adulthood, caregiving, family health, child health care, principles of care, and financing-to inform and guide investigators as they embark on a trajectory of health systems research on CYSHCN.

Understanding Caregiving and Caregivers: Supporting Children and Youth With Special Health Care Needs at Home.

Caregiving encompasses the nurturing, tasks, resources, and services that meet the day-to-day needs of children and youth with special health care needs (CYSHCN) at home. Many gaps exist in the strategies currently offered by the health care system to meet the caregiving needs of CYSHCN. The work of family caregivers of CYSHCN is known to be extensive, but it is so poorly understood that it has been described as "invisible". This invisibility leads to poor communication and gaps in understanding between professional health care providers and family caregivers. To address these gaps, health care researchers must work with family caregivers to incorporate their expertise on caregiving and create meaningful and sustainable research partnerships. A growing body of research is attempting to remedy the problem of caregiving invisibility and lay better foundations for successful integration between health care settings, family caregiving, professional caregiving, and community supports for families of CYSHCN. We identify high-priority gaps in CYSHCN caregiving research and propose research questions that are designed to accelerate growth in evidence-based understanding of the work of family caregivers of CYSHCN and how best to support them.

Priorities for Safer In-Person School for Children With Medical Complexity During COVID-19.

OBJECTIVES: To establish statewide consensus priorities for safer in-person school for children with medical complexity (CMC) during the coronavirus disease 2019 (COVID-19) pandemic using a rapid, replicable, and transparent priority-setting method. METHODS: We adapted the Child Health and Nutrition Research Initiative Method, which allows for crowdsourcing ideas from diverse stakeholders and engages technical experts in prioritizing these ideas using predefined scoring criteria. Crowdsourcing surveys solicited ideas from CMC families, school staff, clinicians and administrators through statewide distribution groups/listservs using the prompt: "It is safe for children with complex health issues and those around them (families, teachers, classmates, etc.) to go to school in-person during the COVID-19 pandemic if/when…" Ideas were aggregated and synthesized into a unique list of candidate priorities. Thirty-four experts then scored each candidate priority against 5 criteria (equity, impact on COVID-19, practicality, sustainability, and cost) using a 5-point Likert scale. Scores were weighted and predefined thresholds applied to identify consensus priorities. RESULTS: From May to June 2021, 460 stakeholders contributed 1166 ideas resulting in 87 candidate priorities. After applying weighted expert scores, 10 consensus CMC-specific priorities exceeded predetermined thresholds. These priorities centered on integrating COVID-19 safety and respiratory action planning into individualized education plans, educating school communities about CMC's unique COVID-19 risks, using medical equipment safely, maintaining curricular flexibility, ensuring masking and vaccination, assigning seats during transportation, and availability of testing and medical staff at school. CONCLUSIONS: Priorities for CMC, identified by statewide stakeholders, complement and extend existing recommendations. These priorities can guide implementation efforts to support safer in-person education for CMC.

Association Between Neighborhood Disadvantage and Pediatric Readmissions.

OBJECTIVE: Although individual-level social determinants of health (SDH) are known to influence 30-day readmission risk, contextual-level associations with readmission are poorly understood among children. This study explores associations between neighborhood disadvantage measured by Area Deprivation Index (ADI) and pediatric 30-day readmissions. METHODS: This retrospective cohort study included discharges of patients aged < 20 years from Maryland's 2013-2016 all-payer dataset. The ADI, which quantifies 17 indicators of neighborhood socioeconomic disadvantage within census block groups, is used as a proxy for contextual-level SDH. Readmissions were identified with the 30-day Pediatric All-Condition Readmissions measure. Associations between ADI and readmission were identified with generalized estimating equations adjusted for patient demographics and clinical severity (Chronic Condition Indicator [CCI], Pediatric Medical Complexity Algorithm [PMCA], Index Hospital All Patients Refined Diagnosis Related Groups [APR-DRG]), and hospital discharge volume. RESULTS: Discharges (n = 138,998) were mostly female (52.7%), publicly insured (55.1%), urban-dwelling (93.0%), with low clinical severity levels (0-1 CCIs [82.3%], minor APR-DRG severity [48.4%]). Overall readmission rate was 4.0%. Compared to the least disadvantaged ADI quartile, readmissions for the most disadvantaged quartile were significantly more likely (aOR 1.19, 95% CI 1.09-1.30). After adjustment, readmissions were associated with public insurance and indicators of medical complexity (higher number of CCIs, complex-chronic disease PMCA, and APR-DRG severity). CONCLUSION: In this all-payer, statewide sample, living in the most socioeconomically disadvantaged neighborhoods independently predicted pediatric readmission. While the relative magnitude of neighborhood disadvantage was modest compared to medical complexity, disadvantage is modifiable and thus represents an important consideration for prevention and risk stratification efforts.

Parent Preferences for Transparency of Their Child's Hospitalization Costs.

Importance: Health care in the US is often expensive for families; however, there is little transparency in the cost of medical services. The extent to which parents want cost transparency in their children's care is not well characterized. Objective: To explore the preferences and experiences of parents of hospitalized children regarding the discussion and consideration of health care costs in the inpatient care of their children. Design, Setting, and Participants: This cross-sectional multicenter survey study included 6 geographically diverse university-affiliated US children's hospitals from November 3, 2017, to November 8, 2018. Participants included a convenience sample of English- and Spanish-speaking parents of hospitalized children nearing hospital discharge. Data were analyzed from January 1, 2020, to June 25, 2021. Main Outcomes and Measures: Parents' preferences and experiences regarding transparency of their child's health care costs. Multivariable linear regression examined associations between clinical and sociodemographic variables with parents' preferences for knowing, discussing, and considering costs in the clinical setting. Factors included family financial difficulties, child's level of chronic disease, insurance payer, deductible, family poverty level, race, ethnicity, parental educational level, and study site. Results: Of 644 invited participants, 526 (82%) were enrolled (290 [55%] male), of whom 362 (69%) were White individuals, 400 (76%) were non-Hispanic/Latino individuals, and 274 (52%) had children with private insurance. Overall, 397 families (75%) wanted to discuss their child's medical costs, but only 36 (7%) reported having a cost conversation. If cost discussions were to occur, 294 families (56%) would prefer to speak to a financial counselor. Ninety-eight families (19%) worried discussing costs would hurt the quality of their child's care. Families with a medical financial burden unrelated to their hospitalized child had higher mean agreement that their child's physician should consider the family's costs in medical decision-making than families without a medical financial burden (effect size, 0.55 [95% CI, 0.18-0.92]). No variables were consistently associated with cost transparency preferences. Conclusions and Relevance: Most parents want to discuss their child's costs during an acute hospitalization. Discussions of health care costs may be an important, relatively unexplored component of family-centered care. However, these discussions rarely occur, indicating a tremendous opportunity to engage and support families in this issue.

Timing of Co-occurring Chronic Conditions in Children With Neurologic Impairment.

BACKGROUND: Children with neurologic impairment (NI) are at risk for developing co-occurring chronic conditions, increasing their medical complexity and morbidity. We assessed the prevalence and timing of onset for those conditions in children with NI. METHODS: This longitudinal analysis included 6229 children born in 2009 and continuously enrolled in Medicaid through 2015 with a diagnosis of NI by age 3 in the IBM Watson Medicaid MarketScan Database. NI was defined with an existing diagnostic code set encompassing neurologic, genetic, and metabolic conditions that result in substantial functional impairments requiring subspecialty medical care. The prevalence and timing of co-occurring chronic conditions was assessed with the Agency for Healthcare Research and Quality Chronic Condition Indicator system. Mean cumulative function was used to measure age trends in multimorbidity. RESULTS: The most common type of NI was static (56.3%), with cerebral palsy (10.0%) being the most common NI diagnosis. Respiratory (86.5%) and digestive (49.4%) organ systems were most frequently affected by co-occurring chronic conditions. By ages 2, 4, and 6 years, the mean (95% confidence interval [CI]) numbers of co-occurring chronic conditions were 3.7 (95% CI 3.7-3.8), 4.6 (95% CI 4.5-4.7), and 5.1 (95% CI 5.1-5.2). An increasing percentage of children had ≥9 co-occurring chronic conditions as they aged: 5.3% by 2 years, 10.0% by 4 years, and 12.8% by 6 years. CONCLUSIONS: Children with NI enrolled in Medicaid have substantial multimorbidity that develops early in life. Increased attention to the timing and types of multimorbidity in children with NI may help optimize their preventive care and case management health services.

Financial Difficulties in Families of Hospitalized Children.

BACKGROUND: High costs of hospitalization may contribute to financial difficulties for some families. OBJECTIVE: To examine the prevalence of financial distress and medical financial burden in families of hospitalized children and identify factors that can predict financial difficulties. DESIGN, SETTING, AND PARTICIPANTS: Cross-sectional survey of parents of hospitalized children at six children's hospitals between October 2017 and November 2018. MAIN OUTCOMES AND MEASURES: The outcomes were high financial distress and medical financial burden. Multivariable logistic regression identified predictors of each outcome. The primary predictor variable was level of chronic disease (complex chronic disease, C-CD; noncomplex chronic disease, NC-CD; no chronic disease, no-CD). RESULTS: Of 644 invited participants, 526 (82%) were enrolled, with 125 (24%) experiencing high financial distress, and 160 (30%) reporting medical financial burden. Of those, 86 (54%) indicated their medical financial burden was caused by costs associated with their hospitalized child. Neither C-CD nor NC-CD were associated with high financial distress. Child-related medical financial burden was associated with both C-CD and NC-CD (adjusted odds ratio [AOR], 4.98; 95% CI, 2.41-10.29; and AOR, 2.57; 95% CI, 1.11-5.93), compared to no-CD. Although household poverty level was associated with both measures, financial difficulties occurred in all family income brackets. CONCLUSION: Financial difficulties are common in families of hospitalized children. Low-income families and those who have children with chronic conditions are at particular risk; however, financial difficulties affect all subsets of the pediatric population. Hospitalization may be a prime opportunity to identify and engage families at risk for financial distress and medical financial burden.

Pediatric Hospitalists' Lessons Learned From an Innovation Award to Improve Care for Children With Medical Complexity.

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.

Ambulatory quality, special health care needs, and emergency department or hospital use for US children.

OBJECTIVE: This study examined family-reported ambulatory care quality and its association with emergency department and hospital utilization, and how these relationships differed across levels of medical complexity. DATA SOURCES: The 2006-2013 Medical Expenditure Panel Survey (MEPS). STUDY DESIGN: Secondary analysis of MEPS data. Variables fitting the National Quality Measures Clearinghouse clinical quality measures domain framework were selected. Exploratory factor analysis grouped ambulatory quality into 12 access, experience, or process measures. Weighted negative binomial regression stratified by health status identified associations between ambulatory quality and ED visits or hospitalizations. DATA COLLECTION: 41,497 children ≤18 years were included. The 5-item special health care needs (SHCN) screener categorized health status as complex, less complex, or no SHCN. PRINCIPAL FINDINGS: Weighted SHCN proportions were 1.6 Percent complex, 18.2 Percent less complex, and 80.0 Percent no SHCN. Mean ED visits were 130 and 335 visits/1000 children/year for no/ complex SHCN, respectively. Mean hospitalizations were 20 and 175 hospitalizations/1000 children/year for no/complex SHCN, respectively. ED visits were associated with 8 of 12 quality measures for no/less complex SHCN. For example, usually/always receiving needed care right away was associated with 22 Percent lower ED visit rate (95% CI 0.64-0.96). Hospitalizations were associated with 4 of 12 quality measures for less complex SHCN. In complex SHCN, associations between ambulatory quality and ED/hospital use were weak and inconsistent. CONCLUSIONS: Ambulatory quality may best predict ED and hospital use for children with no or less complex SHCN. Whether and how ambulatory care predicts emergency and hospital care in complex SHCN remains an important question.

Health System Research Priorities for Children and Youth With Special Health Care Needs.

OBJECTIVES: In this study, we sought to establish priorities for a national research agenda for children and youth with special health care needs (CYSHCN) through a structured, multistakeholder, mixed-methods approach. METHODS: Using surveys, we solicited responses from >800 members of expert-nominated stakeholder organizations, including CYSHCN families, health care providers, researchers, and policymakers, to identify what research with or about CYSHCN they would like to see in a national research agenda. From 2835 individual free-text responses, 96 research topics were synthesized and combined. Using an adapted RAND/UCLA Appropriateness Method (a modified Delphi approach), an expert panel rated research topics across 3 domains: need and urgency, research impact, and family centeredness. Domains were rated on 9-point Likert scales. Panelist ratings were used to sort research topics into 4 relative-priority ranks. Rank 1 (highest priority) research topics had a median of ≥7 in all domains. RESULTS: The RAND/UCLA Appropriateness Method was used to prioritize CYSHCN research topics and depict their varying levels of stakeholder-perceived need and urgency, research impact, and family centeredness. In the 15 topics that achieved rank 1, social determinants of health (disparities and rurality), caregiving (family resilience and care at home), clinical-model refinement (effective model elements, labor divisions, telemedicine, and system integration), value (stakeholder-centered value outcomes, return on investment, and alternative payment models), and youth-adult transitions (planning, insurance, and community supports) were emphasized. CONCLUSIONS: High-priority research topics identified by CYSHCN experts and family leaders underscore CYSHCN research trends and guide important directions. This study is the first step toward an efficient and cohesive research blueprint to achieve highly-effective CYSHCN health systems.

Managing Eating Disorders on a General Pediatrics Unit: A Centralized Video Monitoring Pilot.

Adolescents with severe eating disorders require hospitalization for medical stabilization. Supervision best practices for these patients are not established. This study sought to evaluate the cost and feasibility of centralized video monitoring (CVM) supervision on a general pediatric unit of an academic quaternary care center. This was a retrospective cohort study of nursing assistant (NA) versus CVM supervision for girls 12-18 years old admitted for medical stabilization of an eating disorder between September 2013 and March 2017. There were 37 consecutive admissions (NA = 23 and CVM = 14). NA median supervision cost was more expensive than CVM ($4,104/admission vs $1,166/admission, P < .001). Length of stay and days to weight gain were not statistically different. There were no occurances of family refusal of CVM, conversion from CVM to NA, technological failure, or unplanned discontinuation. Video monitoring was feasible and associated with lower supervision costs than one-to-one NA supervision. Larger samples in multiple centers are needed to confirm the safety, acceptability, and efficacy of CVM.

Asset-Based Community Development as a Strategy for Developing Local Global Health Curricula.

BACKGROUND: A significant and growing proportion of US children have immigrant parents, an issue of increasing importance to pediatricians. Training globally minded pediatric residents to address health inequities related to globalization is an important reason to expand educational strategies around local global health (LGH). METHODS: We developed a curriculum in the pediatric global health residency track at the University of Wisconsin in an effort to address gaps in LGH education and to increase resident knowledge about local health disparities for global community members. This curriculum was founded in asset-based community development (ABCD), a strategy used in advocacy training but not reported in global health education. RESULTS: The initial curriculum outputs have provided the foundation for a longitudinal LGH curriculum and a community-academic partnership. Supported by a community partnership grant, this partnership is focused on establishing a community-based postpartum support group for local Latinos, with an emphasis on building capacity in the Latino community. CONCLUSIONS: Aspects of this curriculum can serve other programs looking to develop LGH curricula rooted in building local partnerships and capacity using an ABCD model.

Experts' Perspectives Toward a Population Health Approach for Children With Medical Complexity.

OBJECTIVE: Because children with medical complexity (CMC) display very different health trajectories, needs, and resource utilization than other children, it is unclear how well traditional conceptions of population health apply to CMC. We sought to identify key health outcome domains for CMC as a step toward determining core health metrics for this distinct population of children. METHODS: We conducted and analyzed interviews with 23 diverse national experts on CMC to better understand population health for CMC. Interviewees included child and family advocates, health and social service providers, and research, health systems, and policy leaders. We performed thematic content analyses to identify emergent themes regarding population health for CMC. RESULTS: Overall, interviewees conveyed that defining and measuring population health for CMC is an achievable, worthwhile goal. Qualitative themes from interviews included: 1) CMC share unifying characteristics that could serve as the basis for population health outcomes; 2) optimal health for CMC is child specific and dynamic; 3) health of CMC is intertwined with health of families; 4) social determinants of health are especially important for CMC; and 5) measuring population health for CMC faces serious conceptual and logistical challenges. CONCLUSIONS: Experts have taken initial steps in defining the population health of CMC. Population health for CMC involves a dynamic concept of health that is attuned to individual, health-related goals for each child. We propose a framework that can guide the identification and development of population health metrics for CMC.

Strategies to Reduce Hospitalizations of Children With Medical Complexity Through Complex Care: Expert Perspectives.

OBJECTIVE: Interventions to reduce disproportionate hospital use among children with medical complexity (CMC) are needed. We conducted a rigorous, structured process to develop intervention strategies aiming to reduce hospitalizations within a complex care program population. METHODS: A complex care medical home program used 1) semistructured interviews of caregivers of CMC experiencing acute, unscheduled hospitalizations and 2) literature review on preventing hospitalizations among CMC to develop key drivers for lowering hospital utilization and link them with intervention strategies. Using an adapted version of the RAND/UCLA Appropriateness Method, an expert panel rated each model for effectiveness at impacting each key driver and ultimately reducing hospitalizations. The complex care program applied these findings to select a final set of feasible intervention strategies for implementation. RESULTS: Intervention strategies focused on expanding access to familiar providers, enhancing general or technical caregiver knowledge and skill, creating specific and proactive crisis or contingency plans, and improving transitions between hospital and home. Activities aimed to facilitate family-centered, flexible implementation and consideration of all of the child's environments, including school and while traveling. Tailored activities and special attention to the highest utilizing subset of CMC were also critical for these interventions. CONCLUSIONS: A set of intervention strategies to reduce hospitalizations among CMC, informed by key drivers, can be created through a structured, reproducible process. Both this process and the results may be relevant to clinical programs and researchers aiming to reduce hospital utilization through the medical home for CMC.

Medical Complexity among Children with Special Health Care Needs: A Two-Dimensional View.

OBJECTIVE: To identify subgroups of U.S. children with special health care needs (CSHCN) and characterize key outcomes. DATA SOURCE: Secondary analysis of 2009-2010 National Survey of CSHCN. STUDY DESIGN: Latent class analysis grouped individuals into substantively meaningful classes empirically derived from measures of pediatric medical complexity. Outcomes were compared among latent classes with weighted logistic or negative binomial regression. PRINCIPAL FINDINGS: LCA identified four unique CSHCN subgroups: broad functional impairment (physical, cognitive, and mental health) with extensive health care (Class 1), broad functional impairment alone (Class 2), predominant physical impairment requiring family-delivered care (Class 3), and physical impairment alone (Class 4). CSHCN from Class 1 had the highest ED visit rates (IRR 3.3, p < .001) and hospitalization odds (AOR: 12.0, p < .001) and lowest odds of a medical home (AOR: 0.17, p < .001). CSHCN in Class 3, despite experiencing more shared decision making and medical home attributes, had more ED visits and missed school than CSHCN in Class 2 (p < .001); the latter, however, experienced more cost-related difficulties, care delays, and parents having to stop work (p < .001). CONCLUSIONS: Recognizing distinct impacts of cognitive and mental health impairments and health care delivery needs on CSHCN outcomes may better direct future intervention efforts.

Preventing hospitalizations in children with medical complexity: a systematic review.

BACKGROUND AND OBJECTIVES: Children with medical complexity (CMC) account for disproportionately high hospital use, and it is unknown if hospitalizations may be prevented. Our objective was to summarize evidence from (1) studies characterizing potentially preventable hospitalizations in CMC and (2) interventions aiming to reduce such hospitalizations. METHODS: Our data sources include Medline, Cochrane Central Register of Controlled Trials, Web of Science, and Cumulative Index to Nursing and Allied Health Literature databases from their originations, and hand search of article bibliographies. Observational studies (n = 13) characterized potentially preventable hospitalizations, and experimental studies (n = 4) evaluated the efficacy of interventions to reduce them. Data were extracted on patient and family characteristics, medical complexity and preventable hospitalization indicators, hospitalization rates, costs, and days. Results of interventions were summarized by their effect on changes in hospital use. RESULTS: Preventable hospitalizations were measured in 3 ways: ambulatory care sensitive conditions, readmissions, or investigator-defined criteria. Postsurgical patients, those with neurologic disorders, and those with medical devices had higher preventable hospitalization rates, as did those with public insurance and nonwhite race/ethnicity. Passive smoke exposure, nonadherence to medications, and lack of follow-up after discharge were additional risks. Hospitalizations for ambulatory care sensitive conditions were less common in more complex patients. Patients receiving home visits, care coordination, chronic care-management, and continuity across settings had fewer preventable hospitalizations. CONCLUSIONS: There were a limited number of published studies. Measures for CMC and preventable hospitalizations were heterogeneous. Risk of bias was moderate due primarily to limited controlled experimental designs. Reductions in hospital use among CMC might be possible. Strategies should target primary drivers of preventable hospitalizations.