Prevalence of and Spending on Ear, Nose, Throat, and Respiratory Infections Among Children With Chronic Complex Conditions.

OBJECTIVE: Ear, nose, throat, and respiratory infections (ENTRI) may affect children with complex chronic conditions (CCC) differently than their peers. We compared ENTRI prevalence and spending in children with and without CCCs. METHODS: Retrospective analysis of 3,880,456 children ages 0-to-18 years enrolled in 9 US state Medicaid programs in 2018 contained in the IBM Watson Marketscan Database. Type and number of CCCs were distinguished with Feudtner's system. ENTRI prevalence, defined as ≥1 healthcare encounters for ENTRI, and Medicaid spending on ENTRI were compared by CCC using chi-square tests and logistic regression. RESULTS: ENTRIs were greater in children with vs. without a CCC (57.7% vs 43.5% [P < .001]). Children with a CCC (5.5%, n = 213,425) accounted for nearly one-fourth ($145.8 million [US]) of total spending on ENTRI. Aside from throat and sinus infection, ENTRI prevalence increased with number of CCCs (P < .001). For example, as number of CCCs increased from zero to ≥3, lower-airway infection increased from 12.5% to 37.5%, P < .001 (OR 4.10; 95% CI 3.95-4.26). ENTRI spending attributable to inpatient care increased from 9.7% to 92.8% (P < .001) as the number of CCCs increased from zero to ≥3. CONCLUSION: Most children with a CCC pursued care for ENTRI in 2018 and these children accounted for a disproportionate share of ENTRI spending. Children with multiple CCCs had a high prevalence of lower-airway infection; most of their ENTRI spending was for inpatient care. Providers can use these findings to counsel patients and families and to inform future investigations on how best to manage ENTRI in children with CCCs.

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.

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.

Low-Resource Emergency Department Visits for Children With Complex Chronic Conditions.

OBJECTIVE: Reducing emergency department (ED) use in children with complex chronic conditions (CCC) is a national health system priority. Emergency department visits with minimal clinical intervention may be the most avoidable. We assessed characteristics associated with experiencing such a low-resource ED visit among children with a CCC. METHODS: A retrospective study of 271,806 ED visits between 2014 and 2017 among patients with a CCC in the Pediatric Health Information System database was performed. The main outcome was a low-resource ED visit, where no medications, laboratory, procedures, or diagnostic tests were administered and the patient was not admitted to the hospital. χ2 Tests and generalized linear models were used to assess bivariable and multivariable relationships of patients' demographic, clinical, and health service characteristics with the likelihood of a low- versus higher-resource ED visit. RESULTS: Sixteen percent (n = 44,111) of ED visits among children with CCCs were low-resource. In multivariable analysis, the highest odds of experiencing a low- versus higher-resource ED visit occurred in patients aged 0 year (vs 16+ years; odds ratio [OR], 3.9 [95% confidence interval {CI}, 3.7-4.1]), living <5 (vs 20+) miles from the ED (OR, 1.7 [95% CI, 1.7-1.8]), and who presented to the ED in the day and evening versus overnight (1.5 [95% CI, 1.4-1.5]). CONCLUSIONS: Infant age, living close to the ED, and day/evening-time visits were associated with the greatest likelihood of experiencing a low-resource ED visit in children with CCCs. Further investigation is needed to assess key drivers for ED use in these children and identify opportunities for diversion of ED care to outpatient and community settings.

Successful healthcare transition for youth with special healthcare needs is a team effort.

ABSTRACT: NPs care for persons across the age continuum and transitions commonly occur. Some are unexpected, like hospitalizations for acute illness or injury. Others are an expected consequence of growing up, like moving from pediatric to adult care models. Understanding the factors impacting healthcare transition is critical for successful outcomes.

Children with disabilities in the United States and the COVID-19 pandemic.

Children with disabilities are disproportionately impacted by COVID-19 and the containment response. Their caregivers must now adapt to increased stressors such as lack of access to needed therapies, medical supplies, and nursing care. Prior to COVID-19 these families were already marginalized, and this has only worsened during the pandemic. As a vulnerable population, children with disabilities have not been the focus of much discussion during the pandemic, likely because the disease disproportionately impacts older individuals. Nonetheless, children with disabilities should be a focus of evaluation and intervention to mitigate the negative consequences of COVID-19 and the resulting containment strategies. Their needs should be included in future crisis planning, as well. In order to raise awareness of pediatric rehabilitation professionals, health care administrators, policy makers, and advocates, this manuscript provides a discussion of the following topics: the immediate and ongoing impacts on children with disabilities and their families, the ethical concerns and implications of triage protocols for scarce resources that consider disability in their scoring systems, and optimizing medical care and educational needs in the time of COVID.