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With advances in medical care, more youth with intellectual and/or developmental disabilities (IDD) are transitioning into adulthood. Patient- and family-centered, integrated care is warranted around this time of transition. Support teams (including the youth, caregivers, teachers, and pediatricians) should engage in transition planning, ideally starting between 12 and 14 years of age, to identify and develop resources to support the maturing youth's capacity for independent decision-making. Care teams should consider the varied levels of alternative decision-making support, which may include supported decision-making, medical proxy decision-making, power of attorney, and/or establishment of legal guardianship arrangements, to support the youth's health and well-being optimally. Ultimately, if independent decision-making is not appropriate, the goal for youth with IDD should be the least restrictive alternative, while preserving human rights and human dignity and promoting their autonomy. These considerations review alternative decision-making support, concepts, and legal requirements available for youth with IDD and their care teams. Pediatricians can support youth with IDD and their families in the transition process and decision-making autonomy by actively engaging the youth in care decisions, supporting needs for augmentative communication, fostering their expression of preferences and understanding of care decisions, and linking them to resources such as themedical-legal partnership model. [ABSTRACT FROM AUTHOR]

Access to services for children and youth with special health care needs (CYSHCN) have typically emphasized coverage, service, timeliness, and capability. Yet families of CYSHCN continue to describe a fragmented health care system with significant unmet needs. For many years, the concept of access to services has focused on the services themselves, rather than starting with the needs of CYSHCN and their families. Meeting these needs should be grounded in health equity, address systemic racism and ableism, and emphasize the life course and journey of those with such needs and their families. In this paper, we start with the simple concept of asking that care is available for CYSHCN regardless of when, where, and how they need it. Access to services is built on relationships instead of a series of transactions. Opportunities for innovation include creating a single point of service entry; determining services based on need instead of diagnosis; and emphasizing service continuity, transition, and a place-based approach. The innovations reimagine access throughout the life course, centering care around a proactive, human-centered system that addresses health and all of its determinants. The landscape of antipoverty investments, cultural humility, workforce changes, technology, and human-centered thought in design have the potential to further transform the conceptual framework to improve access to services for CYSHCN and their families. [ABSTRACT FROM AUTHOR]

In the article, the authors discuss the importance of health care professionals in addressing the life course perspective and barriers to health equity in newborns and infants born to mothers with disabilities. Also cited are a study showing that children born to women with disabilities are at high risk for preterm birth and low birth weight, as well as the relationship between race and disability.

Children and youth with special health care needs (CYSHCN) and their families may experience a variety of internal (ie, emotional and behavioral) and external (ie, interpersonal, financial, housing, and educational) psychosocial factors that can influence their health and wellness. Many CYSHCN and their families are resilient and thrive. Medical home teams can partner with CYSHCN and their families to screen for, evaluate, and promote psychosocial health to increase protective factors and ameliorate risk factors. Medical home teams can promote protective psychosocial factors as part of coordinated, comprehensive chronic care for CYSHCN and their families. A team-based care approach may entail collaboration across the care spectrum, including youth, families, behavioral health providers, specialists, child care providers, schools, social services, and other community agencies. The purpose of this clinical report is to raise awareness of the impact of psychosocial factors on the health and wellness of CYSHCN and their families. This clinical report provides guidance for pediatric providers to facilitate and coordinate care that can have a positive influence on the overall health, wellness, and quality of life of CYSHCN and their families. [ABSTRACT FROM AUTHOR]

Children with medical complexity (CMC) have multiple chronic conditions and require an array of medical- and community-based providers. Dedicated care coordination is increasingly seen as key to addressing the fragmented care that CMC often encounter. Often conceptually misunderstood, care coordination is a team-driven activity that organizes and drives service integration. In this article, we examine models of care coordination and clarify related terms such as care integration and case management. The location of care coordination resources for CMC may range from direct practice provision to external organizations such as hospitals and accountable care organizations. We discuss the need for infrastructure building, design and implementation leadership, use of care coordination tools and training modules, and appropriate resource allocation under new payment models. [ABSTRACT FROM AUTHOR]

OBJECTIVES. Patients with limited English proficiency confront multiple barriers to health care access in the United States. Appropriate language services for families with limited English proficiency are essential; however, little [...]

Approximately 1 in 8 children in the United States are born preterm. Existing guidelines and research examine the cost of prematurity from the NICU stay and developmental surveillance and outcomes after discharge from the NICU. Preterm children are at greater risk for excess hospitalizations, outpatient visits, and societal costs after NICU discharge. Improved delivery of care and health promotion from the community setting, particularly from the patient-centered medical home, may result in improved growth, health, and development, with accompanying reduction of post-NICU discharge costs and encounters. There has been comparatively little focus on how to promote health and wellness for children born preterm, particularly for community-based providers and payers. Accordingly, health care delivery for NICU graduates is often fragmented, with little guidance on medical management beyond tertiary care follow-up. In this article, we use what is known about chronic care and practice transformation models to present a framework for health care system redesign for children born preterm. We discuss the rationale for NICU graduates as a priority population for health system redesign. Promotion of health and wellness for children born preterm who are discharged to the community setting entails population health management from the patient-centered medical home; comanagement, clinical care protocols, and clinical support from the tertiary care-based tertiary care-based center; and a favorable payer strategy that emphasizes support for chronic care management. Practical suggestions are provided for the practicing physician for the child born preterm as health care systems are redesigned. [ABSTRACT FROM AUTHOR]

Children with medical complexity have extensive needs for health services, experience functional limitations, and are high resource utilizers. Addressing the needs of this population to achieve high-value health care requires optimizing care within the medical home and medical neighborhood. Opportunities exist for health care providers, payers, and policy makers to develop strategies to enhance care delivery and to decrease costs. Important outcomes include decreasing unplanned hospital admissions, decreasing emergency department use, ensuring access to health services, limiting out-of-pocket expenses for families, and improving patient and family experiences, quality of life, and satisfaction with care. This report describes the population of children with medical complexity and provides strategies to optimize medical and health outcomes. [ABSTRACT FROM AUTHOR]

BACKGROUND: Family-centered rounds (FCR) are defined as interdisciplinary bedside teaching rounds with active family participation. The objective of this study was to examine the association of FCR with family experiences and health services use. METHODS: Prospective study comparing families with a child admitted to general pediatric inpatient services with and without FCR. The presence of FCR elements was assessed before study enrollment. Study data were obtained by an in-person interview, a follow-up phone interview <1 week after discharge, and medical record review. Family outcomes were informed by Consumer Assessment of Healthcare Providers and Systems measures. Health service use outcomes included hour of discharge, number of medications, and overall charges. Primary analyses included \2 and multivariate regression. Secondary analyses by using propensity score matching were performed to account for differences on observed variables. RESULTS: A total of 140 of 203 eligible families were enrolled; 97 completed follow-up surveys (49 on FCR team). Compared with non-FCR, FCR families were more likely to report consistent medical information (P < .001), the option of discussing care plan (P < .001), doctors listening carefully (P < .01), and doctors showing respect (P < .001). No differences were found in number of medications (mean 2.4 vs 2.9, P = .26) or discharge time (mean 3:06 pm versus 2:43 pm, P = .39). No difference was found for hospital charges after adjusting for length of stay outliers. CONCLUSIONS: FCR are associated with higher parent satisfaction, consistent medical information, and care plan discussion, with no additional burden to health service use. Additional studies should assess FCR under different settings of care. [ABSTRACT FROM AUTHOR]

Children with medical complexity (CMC) have medical fragility and intensive care needs that are not easily met by existing health care models. CMC may have a congenital or acquired multisystem disease, a severe neurologic condition with marked functional impairment, and/or technology dependence for activities of daily living. Although these children are at risk of poor health and family outcomes, there are few well-characterized clinical initiatives and research efforts devoted to improving their care. In this article, we present a definitional framework of CMC that consists of substantial family-identified service needs, characteristic chronic and severe conditions, functional limitations, and high health care use. We explore the diversity of existing care models and apply the principles of the chronic care model to address the clinical needs of CMC. Finally, we suggest a research agenda that uses a uniform definition to accurately describe the population and to evaluate outcomes from the perspectives of the child, the family, and the broader health care system. Pediatrics 2011;127:529-538 Since 1998, the Maternal and Child Health Bureau has defined children with special health care needs (CSHCN) as those children who have or are at increased risk of a chronic physical, developmental, behavioral, or emotional condition and require health care and related services of a type or amount beyond that required by children generally.' An extensive process informed the development of an intentionally broad and inclusive CSHCN definition for the definition to be meaningful for broad program planning and development. Although 13% to 18% of children are considered to have special needs (excluding those who are "at risk" for special needs),2 there is considerable variation in medical complexity, functional limitations, and resource need among CSHCN.34 One important subgroup is the children who are the most medically fragile and have the most intensive health care needs. Examples vary and include children who have a congenital or acquired multisystem disease, a severe neurologic condition with marked functional impairment, or patients with cancer/cancer survivors with ongoing disability in multiple areas. Terms traditionally used to describe this subgroup include a combination of children with 1 or more of the following terms: complex, chronic, medical, conditions, and/or needs (eg, complex chronic conditions [CCCs],5 complex medical needs,6 complex medical conditions,7 and complex health conditions8), as well as medically complex children.910 In this article, we use the term "children with medical complexity" (CMC). The rationales are that it uses "person-first" terminology and refers to the extra time, expertise, and resources necessary to achieve optimal health outcomes forthese children. [ABSTRACT FROM AUTHOR]

Objectives: This study aimed to identify coping factors for caregivers of children with medical complexity (CMC) to manage the stressors and experience associated with their child's hospitalization., Methods: We conducted semistructured interviews with CMC caregivers over a video-conferencing platform to examine factors that they perceive impact their coping while their children are hospitalized. Interviews were audio-recorded, transcribed, and imported into a qualitative coding software (MAXQDA). Using a modified grounded theory approach, we assigned process and in vivo codes to the transcripts and conducted interpretive analysis to identify themes. Once we reached thematic saturation, we finalized themes by discussing them to achieve group consensus and processed themes through triangulation with our institution's pediatric family advisory council., Results: We interviewed 14 caregivers (11 mothers and 3 fathers) and identified 3 major themes. The factors that contributed to CMC caregiver coping with their child's hospitalizations included caregivers: feeling that they are prioritizing their child's needs over their own, feeling trust in their child's interdisciplinary healthcare team, and feeling their self-care practices are well adjusted to the hospital setting., Conclusions: Our study found 3 coping factors for caregivers of CMC during their child's hospitalization. Development and testing of interventions that enhance these coping practices may better support CMC caregivers during their child's hospitalizations. Potential interventions could include developing structured processes to establish caregiver involvement in their child's hospital care and helping caregivers modify their existing coping mechanisms to the hospital setting., (Copyright © 2023 by the American Academy of Pediatrics.)

Background and Objectives: Children and Youth with Special Health Care Needs (CYSHCN) have differing risk factors and injury characteristics compared with peers without special health care needs (SHCN). We examined the association between SHCN status and complications, mortality, and length of stay (LOS) after trauma hospitalization., Methods: We conducted a cross-sectional study using 2018 data from the National Trauma Data Bank for patients aged 1 to 18 years (n = 108 062). We examined the following hospital outcomes: any complication reported, unplanned admission to the ICU, in-hospital mortality, and hospital and ICU LOS. Multivariate regression models estimated the effect of SHCN status on hospital outcomes after controlling for patient demographics, injury severity score, and Glasgow Coma Score. Subanalyses examined outcomes by age, SHCN, and injury severity score., Results: CYSHCN encounters had a greater adjusted relative risk (ARR) of any hospital complications (ARR = 2.980) and unplanned admission to the ICU (ARR = 1.996) than encounters that did not report a SHCN (P < .001). CYSHCN had longer hospital (incidence rate ratio = 1.119) and ICU LOS (incidence rate ratio = 1.319, both P < .001). There were no statistically significant in-hospital mortality differences between CYSHCN and those without. Lower severity trauma was associated with a greater ARR of hospital complications for CYSHCN encounters versus non-CYSHCN encounters., Conclusions: CYSHCN, particularly those with lower-acuity injuries, are at greater risk for developing complications and requiring more care after trauma hospitalization. Future studies may examine mechanisms of hospital complications for traumatic injuries among CYSHCN to develop prevention and risk-minimization strategies., (Copyright © 2023 by the American Academy of Pediatrics.)

Background and Objectives: Opportunities to improve health care quality and contain spending may differ between high and low resource users. This study's objectives were to assess health care and spending among children with Medicaid insurance by their resource use., Methods: Retrospective cross-sectional analysis of 2012 Medicaid health administrative data from 10 states of children ages 11 months to 18 years. Subjects were categorized into 4 spending groups, each representing ∼25% of total spending: the least expensive 80% of children (n = 2,868,267), the next 15% expensive (n = 537,800), the next 4% expensive (n = 143,413), and the top 1% (n = 35,853). We compared per-member-per-month (PMPM) spending across the groups using the Kruskal-Wallis test., Results: PMPM spending was $68 (least expensive 80%), $349 (next 15%), $1200 (next 4%), and $6738 (top 1%). Between the least and most expensive groups, percentages of total spending were higher for inpatient (<1% vs 46%) and mental health (7% vs 24%) but lower for emergency (15% vs 1%) and primary (23% vs 1%) care (all Ps < .001). From the least to most expensive groups, increases in PMPM spending were smallest for primary care (from $15 to $33) and much larger for inpatient ($0.28 to $3129), mental health ($4 to $1609), specialty care ($8 to $768), and pharmacy ($4 to $699)., Conclusions: As resource use increases in children with Medicaid, spending rises unevenly across health services: Spending on primary care rises modestly compared with other health services. Future studies should assess whether more spending on primary care leads to better quality and cost containment for high resource users., (Copyright © 2015 by the American Academy of Pediatrics.)

Background: A major impediment to understanding quality of care for children with disabilities (CWD) is the lack of a method for identifying this group in claims databases. We developed the CWD algorithm (CWDA), which uses International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM) codes to identify CWD., Methods: We conducted a cross-sectional study that (1) ensured each of the 14,567 codes within the 2012 ICD-9-CM codebook was independently classified by 3 to 9 pediatricians based on the code's likelihood of indicating CWD and (2) triangulated the resulting CWDA against parent and physician assessment of children's disability status by using survey and chart abstraction, respectively. Eight fellowship-trained general pediatricians and 42 subspecialists from across the United States participated in the code classification. Parents of 128 children from a large, free-standing children's hospital participated in the parent survey; charts of 336 children from the same hospital were included in the abstraction study., Results: CWDA contains 669 ICD-9-CM codes classified as having a ≥75% likelihood of indicating CWD. Examples include 318.2 Profound intellectual disabilities and 780.72 Functional quadriplegia. CWDA sensitivity was 0.75 (95% confidence interval 0.63-0.84) compared with parent report and 0.98 (0.95-0.99) compared with physician assessment; its specificity was 0.86 (0.72-0.95) and 0.50 (0.41-0.59), respectively., Conclusions: ICD-9-CM codes can be classified by their likelihood of indicating CWD. CWDA triangulates well with parent report and physician assessment of child disability status. CWDA is a new tool that can be used to assess care quality for CWD., (Copyright © 2015 by the American Academy of Pediatrics.)

Background and Objectives: Access to appropriate language services is critical for ensuring patient safety and reducing the impact of language barriers. This study compared language services use by US pediatricians in 2004 and 2010 and examined variation in use in 2010 by pediatrician, practice, and state characteristics., Methods: We used data from 2 national surveys of pediatricians (2004: n = 698; 2010: n = 683). Analysis was limited to postresidency pediatricians with patients with limited English proficiency (LEP). Pediatricians reported use of ≥ 1 communication methods with LEP patients: bilingual family member, staff, physician, formal interpreter (professional, telephone), and primary-language written materials. Bivariate analyses examined 2004 to 2010 changes in methods used, and 2010 use by characteristics of pediatricians (age, sex, ethnicity), practices (type, location, patient demographics), and states (LEP population, Latino population growth, Medicaid/Children's Health Insurance Program language services reimbursement). Multivariate logistic regression was performed to determine adjusted odds of use of each method., Results: Most pediatricians reported using family members to communicate with LEP patients and families, but there was a decrease from 2004 to 2010 (69.6%, 57.1%, P < .01). A higher percentage of pediatricians reported formal interpreter use (professional and/or telephone) in 2010 (55.8%) than in 2004 (49.7%, P < .05); the increase was primarily attributable to increased telephone interpreter use (28.2%, 37.8%, P < .01). Pediatricians in states with reimbursement had twice the odds of formal interpreter use versus those in nonreimbursing states (odds ratio 2.34; 95% confidence interval 1.24-4.40)., Conclusions: US pediatricians' use of appropriate language services has only modestly improved since 2004. Expanding language services reimbursement may increase formal interpreter use.

We report on the successful collaborative care of an adolescent with chronic fatigue syndrome between a primary care pediatrician and an academic chronic fatigue syndrome specialist located in different cities. Regular telephone and e-mail communication and clearly defined patient-care roles allowed for timely management of symptoms and marked clinical improvement. We discuss ways to improve the collaboration of primary care and subspecialty physicians for patients with chronic fatigue syndrome and children with special health care needs.