Health Equity for Children and Youth With Special Health Care Needs: A Vision for the Future.

Health equity is a key pillar in supporting a future in which CYSHCN enjoy a full life and thrive, as envisioned by experts and community partners who gathered in 2019 and 2020 to develop the Blueprint for Change: Guiding Principles for a System of Services for Children and Youth With Special Health Care Needs and Their Families. However, a variety of contextual factors impact health outcomes across the life course and intergenerationally and must be addressed to achieve this goal. For example, poverty and discrimination, including by some health care professionals and systems, are important, modifiable root causes of poor health outcomes. There are numerous barriers to achieving health equity, including political will, lack of resources, insufficient training, and limited cross-sector collaborations. Political, cultural, societal, and environmental interventions are necessary to eliminate health disparities and achieve health equity. The entities that serve CYSHCN should be equitably designed and implemented to improve health outcomes and address health disparities. Many entities that serve CYSHCN are taking positive steps through workforce development, policy changes, community engagement, and other means. The purpose of this article is to frame health equity for CYSHCN, detail their health disparities, review barriers to health equity, provide examples of strategies to advance health equity for them, and describe a path toward the future in which all CYSHCN have a fair and just opportunity to be as healthy as possible.

Home nursing for children with home mechanical ventilation in the United States: Key informant perspectives.

OBJECTIVES & HYPOTHESIS: Children with home mechanical ventilation (HMV) require skilled care by trained caregivers, and their families feel the impacts of ubiquitous home nursing shortages. It is unknown which factors determine allocation; no standards for private duty nursing intensity exist. We sought to characterize provider experiences with and opinions on home nursing for children with HMV, hypothesizing providers would describe frequent home nursing gaps across clinical scenarios. METHODS: Purposeful and snowball sampling identified key informant clinical providers. Survey topics included hours of home nursing received across clinical and family scenarios. Close-ended responses were analyzed using descriptive statistics and open-ended questions coded with iterative modification for major theme agreement. RESULTS: A total of 59 respondents represented care of patients from 44 states; 49.2% physicians, 37.3% nurses, 10.2% respiratory therapists, and 3.4% case managers. Nearly all (97%) believed that families should receive more hours during initial home transition, yet less than half (47%) do. The majority (80.7%) thought the presence of other children in the home should influence nursing hours, yet only three (5.3%) reported other children have influence. Across hypothetical medical technology scenarios, providers consistently described children receiving fewer nursing hours than the providers' ideal practice. A third (31.7%) described discharging patients without any home nursing arranged. CONCLUSIONS: This HMV provider sample highlights pervasive deficiency in home nursing provision with heterogenous interpretation of what constitutes ideal home care. Family and social contextual factors are infrequently considered in nursing allocations. Provider, community health, and family stakeholders must collaborate to generate national community practice standards for children with HMV.

Discharge Practices for Children with Home Mechanical Ventilation across the United States. Key-Informant Perspectives.

Rationale: In 2016, the American Thoracic Society released clinical practice guidelines for pediatric chronic home invasive ventilation pertaining to discharge practices and subsequent management for patients with invasive ventilation using a tracheostomy. It is not known to what extent current U.S. practices adhere to these recommendations.Objectives: Hospital discharge practices and home health services are not standardized for children with invasive home mechanical ventilation (HMV). We assessed discharge practices for U.S. children with HMV.Methods: A survey of key-informant U.S. clinical providers of children with HMV, identified with purposeful and snowball sampling, was conducted. Topics included medical stability, family caregiver training, and discharge guidelines. Close-ended responses were analyzed using descriptive statistics. Responses to open-ended questions were analyzed using open coding with iterative modification for major theme agreement.Results: Eighty-eight responses were received from 157 invitations. Eligible survey responses from 59 providers, representing 44 U.S. states, included 49.2% physicians, 37.3% nurses, 10.2% respiratory therapists, and 3.4% case managers. A minority, 22 (39%) reported that their institution had a standard definition of medical stability; the dominant theme was no ventilator changes 1-2 weeks before discharge. Nearly all respondents' institutions (94%) required that caregivers demonstrate independent care; the majority (78.4%) required two trained HMV caregivers. Three-fourths described codified discharge guidelines, including the use of a discharge checklist, assurance of home care, and caregiver training. Respondents described variable difficulty with obtaining durable medical equipment, either because of insurance or durable-medical-equipment company barriers.Conclusions: This national U.S. survey of providers for HMV highlights heterogeneity in practice realities of discharging pediatric patients with HMV. Although no consensus exists, defining medical stability as no ventilator changes 1-2 weeks before discharge was common, as was having an institutional requirement for training two caregivers. Identification of factors driving heterogeneity, data to inform standards, and barriers to implementation are needed to improve outcomes.

Home Health Care For Children With Medical Complexity: Workforce Gaps, Policy, And Future Directions.

With the medical and surgical advances of recent decades, a growing proportion of children rely on home-based care for daily health monitoring and care tasks. However, a dearth of available home health care providers with pediatric training to serve children and youth with medical complexity markedly limits the current capacity of home health care to meet the needs of patients and their families. In this article we analyze the workforce gaps, payment models, and policy challenges unique to home health care for children and youth with medical complexity, including legal challenges brought by families because of home nursing shortages. We propose a portfolio of solutions to address the current failures, including payment reform, improved coordination of services and pediatric home health training through partnerships with child-focused health systems, telehealth-enabled opportunities to bridge current workforce gaps, and the better alignment of pediatric care with the needs of adult-focused long-term services and supports.

Unmet Respite Needs of Children With Medical Technology Dependence.

Children with medical technology dependency (MTD) require a medical device to compensate for a vital body function and substantial nursing care. As such, they require constant high-level supervision. Respite care provides caregivers with a temporary break, and is associated with reduced stress; however, there are often barriers. The study utilizes mixed methodology with the National Survey of Children with Special Health Care Needs (NS-CSHCN) and semistructured interviews with state-wide care coordinators to understand the gap for respite care services. Fifty-nine percent of parents who needed respite care received none. Parents of older children with MTD were more likely to report respite needs. Care coordinators described that home health shortages created barriers to respite care utilization, and the lack of respite care can lead to hospital readmission. Although respite care is a vital resource to support families of children with MTD, it is infrequently available, which can have severe consequences.

Pediatric patients with home mechanical ventilation: The health services landscape.

OBJECTIVE: Children with invasive home mechanical ventilation (HMV) are a growing population with complex health service needs. Single institution studies provide insight into successful program structures and outcomes. Our study objectives were to assess health service structures, providers, and programs caring for this population throughout the U.S., and to understand barriers to high-quality care. DESIGN: Using purposeful sampling with capture-recapture and snowball sampling methods, we identified key informants for care of the U.S. pediatric HMV population. Informants received web-based surveys with two reminders. Survey domains included respondent characteristics, HMV team composition, and barriers to care. RESULTS: Survey response was 71% with 101 completed. Respondents caring for patients in 45 states included physicians (61%), nurses (20%), therapists (12%), case managers (4%), and social workers (2%). Half (53%) of physicians were fellowship trained, most commonly pulmonology (22%) and critical care medicine (13%). The majority (65%) of providers described a dedicated HMV service. The majority (61%) of respondents from a HMV service provided both inpatient and outpatient care. Nearly all respondents (96%) described an inadequate supply of home nurses and 88% reported inadequate respite facilities. CONCLUSIONS: Children with HMV assistance receive care from a diverse group of providers with varied team structure. Heterogeneity may reflect patient diversity and provider interest, increasing efficacy but challenging standardization nationwide. Despite team structure variability, similar home care difficulties were universally experienced. Data suggest that the home nursing shortage is a national impediment to quality and efficient discharge with limited community-based support for this vulnerable population.

Connecting Hospital to Home: Characteristics of and Rehospitalization Rates in Hospitalized Children With Private-Duty Nursing.

OBJECTIVES: Children with medical complexity are frequently hospitalized and have extensive health care needs. Private-duty nursing (PDN) is a service on which some children with medical complexity rely to live at home, but little is known about patients discharged with PDN. Our objective for this study was to describe the characteristics and longitudinal outcomes of patients with PDN who are hospitalized. METHODS: This study was a 1-year retrospective study of patients receiving PDN who were hospitalized at a quaternary freestanding children's hospital; there was an additional 2-year follow-up. Patient characteristics, rehospitalization rates, length of stay, mortality, and hospital charges were identified. Descriptive statistics were performed to characterize trends, and a time-to-event analysis was used to characterize unplanned rehospitalization. RESULTS: Among 8187 unique patients who were hospitalized in the initial study year (June 1, 2014 to -May 31, 2015), 188 patients (2%) used PDN. Of patients using PDN, 94% used gastrointestinal devices. The median index length of stay was 4 days (interquartile range 2-6). Two-year mortality was 12%. Cumulative all-cause rehospitalization rates were 18% by 30 days, 62% by 365 days, and 87% within 2 years; the median rehospitalization frequency was 3 per patient. The most common reasons for unplanned rehospitalization were infection (41%) and device complication (10%). During the study period, 11% of both rehospitalizations and total hospital days were attributed to patients with PDN. Unplanned rehospitalizations of patients with PDN accounted for $117 million in hospital charges. CONCLUSIONS: One in 50 patients hospitalized at a single center were discharged with PDN, which accounted for a disproportionate level of hospital use. Future research should be used to address whether the access and quality of PDN may impact rehospitalization.

Prolonged Hospital Discharge for Children with Technology Dependency: A Source of Health Care Disparities.

Children with ventilator assistance have been supported in living at home since 1981 when parental advocacy ushered in a change to Medicaid policy. As the population of children who use medical technology such as long-term ventilation increases, we must critically evaluate our systems for preparing families for home life. Discharge delays persist in the modern era because of fragmentation between hospital and home systems. These discharge delays result in children spending time in less developmentally rich environments, further exacerbating the health and development disparities of children with complex disabilities. In this article, we discuss the complication of hospital discharge and how it contributes to health and developmental disparities. We also describe a hospital-to-home transitional care model, which presents a home-like environment to provide developmental support while focusing on parental training, home nursing, and public-funding arrangements. [Pediatr Ann. 2017;46(10):e365-e370.].

Children's Hospital Characteristics and Readmission Metrics.

BACKGROUND AND OBJECTIVE: Like their adult counterparts, pediatric hospitals are increasingly at risk for financial penalties based on readmissions. Limited information is available on how the composition of a hospital's patient population affects performance on this metric and hence affects reimbursement for hospitals providing pediatric care. We sought to determine whether applying different readmission metrics differentially affects hospital performance based on the characteristics of patients a hospital serves. METHODS: We performed a cross-sectional analysis of 64 children's hospitals from the Children's Hospital Association Case Mix Comparative Database 2012 and 2013. We calculated 30-day observed-to-expected readmission ratios by using both all-cause (AC) and Potentially Preventable Readmissions (PPR) metrics. We examined the association between observed-to-expected rates and hospital characteristics by using multivariable linear regression. RESULTS: We examined a total of 1 416 716 hospitalizations. The mean AC 30-day readmission rate was 11.3% (range 4.3%-19.6%); the mean PPR rate was 4.9% (range 2.9%-6.9%). The average 30-day AC observed-to-expected ratio was 0.96 (range 0.63-1.23), compared with 0.95 (range 0.65-1.23) for PPR; 59% of hospitals performed better than expected on both measures. Hospitals with higher volumes, lower percentages of infants, and higher percentage of patients with low income performed worse than expected on PPR. CONCLUSIONS: High-volume hospitals, those that serve fewer infants, and those with a high percentage of patients from low-income neighborhoods have higher than expected PPR rates and are at higher risk of reimbursement penalties.