OBJECTIVE:Family caregivers of children and youth with special health care needs (CYSHCN) are often tasked with managing their children's health care. This study aims to evaluate what factors, if any, contribute to CYSHCN caregivers' self-efficacy managing their children's health care. PATIENTS AND METHODS:We conducted a national cross-sectional survey of English- and Spanish-speaking CYSHCN family caregivers (September 2023-December 2023). Caregiver self-efficacy was measured using a validated 30-item survey of pediatric health care tasks assessed with a 5-point confidence scale. Mean and median item responses were examined. Item-specific responses were dichotomized into those with "lower self-efficacy" ("not" [1] to "somewhat" [3] confident) and "higher" self-efficacy ("quite" [4] to "very" [5] confident). Analysis of variance and regression were used to evaluate differences in self-efficacy across demographic variables. RESULTS:A total of 1132 respondents participated. Median IQR scores were 5 (4, 5) and mean of 4.39, SD ± 0.68. Responses ranged from 1 to 5; between 10% to 24% of respondents had "lower" self-efficacy across individual items. In adjusted analyses, caregivers with ≥ college education, married status, or widowed/divorced status had higher composite self-efficacy than their reference groups (β = 0.11-0.21, σM = 0.05-0.07). Lack of/unknown child insurance status was associated with lower caregiver composite self-efficacy (β = -0.25, σM = 0.1). Longer duration of caregiving was associated with higher composite self-efficacy (3-5 years [β = 0.28, σM = 0.08], 5-10 years [β = 0.41, σM = 0.09], >10 years [β = 0.36, σM = 0.09]) in comparison with <6 months. CONCLUSION:While median item-specific self-efficacy scores were high, we identified respondents with lower self-efficacy across all items. Composite self-efficacy scores were associated with caregiver characteristics.

Importance:The heterogeneous population of children and youth with special health care needs (SHCN) has suboptimal health indicators. Subpopulations may have distinct health needs and indicators. Objective:To identify distinct subpopulations of children and youth with SHCN and examine associations with policy-relevant health indicators. Design, Setting, and Participants:Using pooled data from the nationally representative National Survey of Children's Health, latent class analysis identified subpopulations of children and youth with SHCN aged 0 to 17 years from 2019 to 2021. Weighted multivariable logistic regressions examined associations between class membership and 7 health indicators, adjusting for demographic and household characteristics. Data were analyzed from September 2023 to February 2026. Exposure:Fourteen indicators reflecting health-related needs, functional limitations, and health care use were selected from the national survey by dual review. Main Outcomes and Measures:Health indicators representing the 10 domains for a healthy life conceptual framework were selected by dual review. Seven indicators rated by a national expert panel as potentially modifiable and high impact were included. Results:The National Survey of Children's Health had a sample size of 29 433 in 2019, 42 777 in 2020, and 50 892 in 2021. The estimated male population of children and youth with SHCN was 56% (n = 10 106 838), and the estimated female population was 44% (n = 7 920 925). A total of 19% (n = 3 332 877) were aged 0 to 5 years, 36% (n = 6 476 250) were aged 6 to 11 years, and 46% (n = 8 218 637) were aged 12 to 17 years. Among a weighted population of 18 027 763 children and youth with SHCN, 4 distinct classes were observed: low intensity (67%; n = 12 083 605), developmental and behavioral impacts (14%; n = 2 542 398), dynamic (13%; n = 2 349 486), and complex (6%; n = 1 053 274). Classes differed significantly in demographic characteristics and health indicator associations. The low-intensity class exhibited few health-related needs, little functional limitation, and minimal health care use. The developmental and behavioral impacts class exhibited predominantly functional limitations, while the dynamic class exhibited primarily health care use. The complex class exhibited substantial health-related needs, functional limitations, and health care use. Compared with the low-intensity class, the other classes had significantly lower odds of experiencing positive health indicators (household always able to provide basics: adjusted odds ratio [aOR], 1.51; 95% CI, 1.32-1.70; family demonstrates resilience: aOR, 1.31; 95% CI, 1.15-1.49; child received care when needed: aOR, 3.02; 95% CI, 2.44-3.74; child had adequate and continuous insurance: aOR, 1.94; 95% CI, 1.72-2.18; insurance covers mental and behavior health: aOR, 2.47; 95% CI, 2.19-2.77; no difficulty accessing specialists: aOR, 2.24; 95% CI, 1.87-2.70; no difficulties finding mental health treatment: aOR, 1.93; 95% CI, 1.62-2.30). Conclusions and Relevance:This study identified 4 distinct subpopulations of children and youth with SHCN. The unique sociodemographic and health indicator associations for latent classes suggest that policies and programs may require tailoring to maximize efficiency and effectiveness across this otherwise diverse and heterogeneous pediatric population.

BACKGROUND AND OBJECTIVES:Discrimination in health care settings negatively impacts adult health and well-being; however, it is not well studied in pediatrics. This study aimed to evaluate discrimination in medical settings in a multi-site cohort and examine its association with caregiver mental health. METHODS:This cross-sectional study used survey responses from 718 caregiver-child dyads from 9 academic medical centers participating in the Family CIRCLE cohort. Eligibility criteria included age younger than 16 years and at least 1 complex chronic condition and at least 2 health care encounters in the prior year. The primary exposure was the Discrimination in Medical Settings (DMS) Scale adapted for child health with higher scores indicating more discrimination. The primary outcome was self-perceived caregiver mental health. Responses were dichotomized into favorable (excellent, very good, good) and unfavorable (fair, poor) categories. Multivariate logistic regression models estimated the association between DMS responses and unfavorable mental health. RESULTS:Of 673 caregivers who completed at least 1 DMS question, 401 (59.6%) reported experiencing some discrimination. The median (IQR) discrimination score was 9 (7-14, range: 7-28). Compared with caregivers of children without a disability, caregivers of children with disabilities reported more discrimination (P < .001). In a multivariable model adjusting for child and caregiver characteristics, DMS scores in the highest quartile (vs the lowest) had higher odds of unfavorable caregiver mental health (adjusted odds ratio: 2.5 [95% CI: 1.5-4.1]). CONCLUSIONS:Discrimination in medical settings was reported by 60% of caregivers of children with medical complexity and was associated with increased odds of unfavorable caregiver mental health. Future efforts should address discrimination to improve health systems.

This study quantified medication management experiences for children with medical complexity and associations with caregiver stress or benefit. Using data from the MedS@HOME trial, involvement of professional caregivers was associated with increased caregiver benefit, and greater network collective efficacy was associated with increased caregiver benefit and decreased caregiver stress.

BACKGROUND AND OBJECTIVES:Children with medical complexity (CMC) are hospitalized frequently. Caregivers play a critical role in mitigating hospitalization risk. This study aimed to examine the association between caregiver acute illness self-efficacy and the perception of future hospitalization preventability. METHODS:Two survey periods from the Family CMC Innovation Research Cohort With Longitudinal Evaluation, a 9-site, prospective, and longitudinal cohort study following 718 caregiver/CMC dyads, were used in this analysis. Caregivers responded to 2 scaled questions assessing their self-efficacy in treating their child's acute illness. The study outcome was the presence or absence of the perception that the child's future hospitalizations could be prevented. Associations between caregiver acute illness self-efficacy and perceived future hospitalization preventability were examined using logistic regression clustered by site and adjusted for sociodemographic and clinical confounders. Caregivers also rated the preventability of hospitalization for specific conditions. RESULTS:Among 513 participants with exposure and outcome data, most (73.1%) caregivers perceived that future hospitalizations are preventable. Caregivers with high acute illness self-efficacy were an adjusted odds ratio 2.77 (95% CI, 1.13-6.83) times more likely than caregivers with low self-efficacy to perceive that future hospitalizations are preventable. Most families perceived nearly all queried conditions were preventable more than 50% of the time. Over 70% of caregivers perceived that the majority of hospitalizations for growth, respiratory illness, constipation, and pain were preventable. CONCLUSIONS:Nearly three-quarters of caregivers in this national multisite study perceived that future hospitalizations could be prevented for CMC. Designing interventions focused on self-efficacy for treating acute illness, and the identified conditions may be productive for future research directions.

OBJECTIVES:The objective of this study was to distinguish empirical classes among children with complex chronic conditions (CCCs) and to assess whether such classes can predict future health care use. METHODS:We analyzed claims data from children aged 1 to 18 years with a CCC who were continuously enrolled in a 10-state Medicaid database from 2017 to 2019. We performed a latent class analysis using demographic factors, clinical characteristics, and health care use patterns in 2017 and assessed the ability of the classes to differentiate health care spending and use in 2018 to 2019 using negative binomial and logistic regression. RESULTS:We included 185 672 children with a CCC (52% male; median [IQR] age: 11 [5, 15] years). Eight indicator variables led to a 3-class solution (entropy = 0.83): Class 1 (9.1% of the cohort) was characterized by high neuro-disability, high technology dependence, and high multimorbidity; Class 2 (14.8%) had high neuro-disability and low technology dependence; and Class 3 (76.0%) had low neuro-disability and low technology dependence. Compared with children in Class 3, total spending in 2017 to 2018 was increased among both Class 1 and Class 2 (total spending rate ratio [RR] 6.9 [95% CI: 6.7-7.0] and RR 2.5 [95% CI: 2.5-2.6], respectively). The largest categories of subsequent spending were for inpatient care and outpatient specialist services among individuals in Class 1 and for outpatient drugs, outpatient specialists, and mental health for those in Class 2. CONCLUSIONS:Children with CCCs can be categorized into meaningful classes based on readily available data with different patterns of future health care use and costs.

OBJECTIVE:Family engagement is a priority for improving health care systems for children and youth with special health care needs (CYSHCN). The science of family engagement is evolving, and better understanding of the current state of research could promote improved implementation. This scoping review aimed to summarize the literature on family engagement in systems-level research for families of CYSHCN, specifically focusing on definitions/descriptions of engagement, engagement measurement, and whether and how measures correlated with outcomes. METHODS:This scoping review followed the JBI Manual for Evidence Synthesis and PRISMA-ScR guidelines. We searched MEDLINE, Embase, Web of Science and Cochrane CENTRAL, and ClinicalTrials.gov to identify studies involving family engagement in systems-level research for CYSHCN. Abstracts and selected articles were screened and family engagement-related data were extracted for included articles. RESULTS:From 2123 unique articles, 403 received full text review, and 50 articles met the inclusion criteria. The number of included articles grew over time from 1 prior to 2000 to 27 after 2020. Family members, predominantly parents and caregivers, were involved in various research roles, with most studies having families involved in many aspects of the project. Specific roles included participation in study design, intervention delivery, implementation, and dissemination. Few studies (3) used formal measures of engagement limiting our ability to describe how engagement changed systems of care. CONCLUSIONS:Descriptions of family engagement are varied and very few studies use measures of engagement. As the literature grows, future studies should focus on standardized and transparent reporting about engagement, including using tools to measure engagement. This review was registered on Open Science Forum at https://doi.org/10.17605/OSF.IO/Q6CN3.

OBJECTIVE:We aimed to determine the frequency of, and factors associated with, new technology dependence among hospitalized pediatric trauma survivors. METHODS:We performed a retrospective cross-sectional study of encounters from over 800 US hospitals using the 2021 and 2022 American College of Surgeons National Trauma Data Bank Trauma Quality Improvement Program files. We included children younger than 18 years hospitalized for trauma who survived to discharge. We performed multivariable logistic regression to determine the effect of exposures including injury mechanism and serious injuries on our primary outcome of interest, the performance of a procedure conferring technology dependence as defined by the Pediatric Complex Chronic Condition System Version 3. Secondary outcomes included hospital length of stay, complications, and discharge disposition. RESULTS:Among 183 848 hospitalized pediatric trauma survivors (median age: 10 years, 64.1% male), 2.0% underwent a procedure conferring new technology dependence. Firearm (odds ratio [OR] 3.8) and traffic injuries (OR 2.4) were associated with new technology dependence, and serious injuries to all but 1 body system (extremities) were associated with new technology dependence, particularly head and neck injuries (OR 9.2). The most common procedure types were spinal fusion (41.0%), cerebrospinal fluid drainage (27.6%), and feeding device placement (27.6%). Children with new technology dependence experienced longer hospital stays, more complications, and were less frequently discharged home without services. CONCLUSIONS:One in 50 hospitalized pediatric trauma survivors underwent procedures conferring new technology dependence. These findings underscore the need for trauma-informed survivorship care and prevention strategies that address the chronic health consequences of childhood injury.

Children with medical complexity (CMC) are a heterogenous population1 with numerous comorbidities emerging over time.2 Autism spectrum disorder (ASD) may be an unfamiliar archetype of medical complexity; however, children with ASD often have profiles mirroring CMC, namely severe chronic conditions and functional limitations leading to high health care use and service needs.3,4 When children with ASD have co-occurring intellectual disability, health care costs are especially high.5 Using all-payer claims data from 3 states, ASD was identified in approximately 9% of CMC.6 ASD is more common in children with severe cerebral palsy,7,8 and a small study observed that ASD may have been present in up to two-thirds of children assisted by invasive mechanical ventilation.9 Although CMC prevalence is estimated to be between 0.5% and 11% of children,10 and ASD prevalence is estimated at 2.8%,11 the population-based prevalence of overlap and its impact is unknown.In this issue of Pediatrics, Smith et al address this knowledge gap by quantifying medical complexity and ASD overlap and the striking association with greater health care expenditures when the conditions occur together.12 Using data from 2 national surveys—the National Survey of Children's Health (NSCH) and the Medical Expenditure Panel Survey (MEPS)—Smith et al calculated the frequencies of having medical complexity or ASD alone or medical complexity with ASD. About 35% to 40% of CMC had ASD, and this group's expenditure accounted for approximately 50% of all CMC expenditures. Although approximately 18% to 60% of children with ASD had medical complexity (depending on medical complexity definition), this group's expenditure accounted for approximately 77% of all ASD expenditures. In the absence of a universal definition of medical complexity, the exact prevalence of overlap will be imprecise; however, a key takeaway is that ASD and medical complexity often occur together.Estimates of this intersectionality may be conservative. Most clinicians caring for CMC are pediatricians,13 and diagnosing ASD in children with neurologic impairment or comorbidities affecting social and communication abilities largely falls beyond the scope of general practice. Known disparities in ASD diagnosis are attributed in part to uneven geographic distribution of diagnostic centers, community stigma, structural racism, and provider bias.14,15 Diagnostic overshadowing, ie, biased attribution of signs and symptoms to an existing diagnosis rather than a new condition, often affects children with ASD.16,17 Clinicians caring for children with ASD may overly attribute new concerns to ASD rather than different conditions. Clinicians caring for CMC may also overattribute sociocommunication challenges to primary diagnoses. Greater recognition could lead to more diagnoses and reporting in surveys and administrative data.Children, families, and health systems dealing with the combination of ASD and medical complexity face several potentially cascading consequences. Burden on families caring for either condition is substantial,18,19 and the uniquely high expenditures of the intersecting population suggests compounding strain as families navigate the web of services needed to adequately address their needs. Common to both groups, families often have to stop work to meet caregiving demands, eg, daily medical and behavioral treatments, clinic visits, therapies, and alternative education arrangements.5,20 Many caregivers establish their own unfunded,5,21 invisible health systems at home,22 with unrealistic or unsafe caregiving requirements to which they must adapt.23,24 Systems of care, particularly for children transitioning into adult systems, are especially complicated for families to manage without support, resulting in service gaps.25,26 Although caregiving results in many positive experiences, the magnitude of challenges suggests that more efficient, family-centered models that promote family resilience and address stress is an important priority.The Smith et al study has important implications for pediatricians because children and families stand to gain from greater identification of overlap. To avoid diagnostic overshadowing, the threshold for diagnostic referral to an ASD expert should be low in the face of compatible signs and symptoms. The advantage of an ASD diagnosis for CMC can include access to autism-specific intervention services that benefit caregivers and children.27,28 For example, Applied Behavior Analysis therapy is a covered benefit under the Early and Periodic Screening, Diagnostic, and Treatment program in all 50 states. Pediatricians should advocate for funding and workforce expansion to reduce access disparities for effective ASD services.14 Simultaneously, although there is no test to diagnose medical complexity in clinical care, pediatricians caring for children with severe ASD might apply strategies frequently used by complex care programs, such as care mapping, shared care planning, crisis action planning (eg, adapted to address challenging behaviors), and developing strong ties to collaborate with community and education systems.29–32 In fact, crisis action planning is a need identified in ASD research.33,34The Smith et al study encourages us to consider how innovative care models for CMC and for children with ASD can be designed to benefit children, families, and health systems. The health home concept promoted in the 2019 Advancing Care for Exceptional Kids Act, in which severe ASD is a listed example of an applicable chronic condition, is one strategy to enhance care coordination for CMC enrolled in Medicaid. Health home services include comprehensive care and coordination, access to the full range of pediatric subspecialty services, comprehensive transition care, patient and family support, referrals to community and social support, and use of health information technology to link services.However, intersectionality is complicated. Simply adding what works for CMC to what works for children with ASD may not yield an effective approach for children with both conditions.35 This population might require unique approaches. Learning collaboratives among ASD practitioners, general pediatrics, and complex care providers might yield a productive framework for testing the feasibility, acceptability, and impact of sharing care practices between ASD- and CMC-focused clinics. Existing programs to enhance primary care for children with ASD using the ECHO model (extension for community healthcare outcomes)36 could be adapted to integrate complex care for greater shared learning. Amidst these unknowns, the research of Smith et al inspires several exciting clinical and research directions that ultimately benefit children with ASD and medical complexity.

This survey study quantifies state-to-state variation and predictors of Medicaid insurance continuity and adequacy among children with special health care needs.

BACKGROUND:Respiratory illness is consistently the leading cause of death and hospitalization in severe cerebral palsy (CP). Respiratory Exacerbations-Plan for Action and Care Transitions (RE-PACT) is a just-in-time adaptive intervention to prevent respiratory illness in severe CP. RE-PACT combines early illness detection with rapid clinical response to address varying causes of respiratory illness early enough to modify illness trajectory. This study's objective was to determine RE-PACT's feasibility, acceptability, fidelity, and estimated effect size. METHODS:This two-site randomized controlled trial occurred from April 2022-February 2024 in demographically and geographically distinct locations. Caregiver-child pairs were recruited from complex care programs, and children had both gross motor function classification system level 4-5 CP and either pulmonologist care or daily respiratory treatments. Children were randomized to usual care or RE-PACT for six months. Primary outcomes were feasibility, acceptability, and fidelity measures having a priori definitions of success. The primary clinical outcome was the severe respiratory illness (SRI) event rate, defined as hospitalizations due to respiratory diagnoses. Clinicaltrials.gov registration is NCT05292365. RESULTS:Sixty children were enrolled, of which 26 were randomized into RE-PACT. Measures confirmed RE-PACT's feasibility, acceptability, and fidelity, e.g., text message response rates were 97.5%, and no action planning or clinical responder activities were missed. System usability scale scores were "good to excellent" (mean [SD], 79.5 [11.7]). The RE-PACT SRI event rate (95% confidence interval, CI) was 0.71 (0.36-1.14) per person-year compared to the usual care event rate 1.08 (0.61-1.91) per person-year, a risk ratio of 0.66 (0.28-1.56). Secondary outcomes and qualitative data reinforced RE-PACT's positive impact. CONCLUSIONS:RE-PACT is a feasible, acceptable intervention that can be delivered with high fidelity to diverse families caring for children with severe CP. These data inform the sample and design characteristics needed for efficacy testing of RE-PACT's ability to prevent severe respiratory illness.

BACKGROUND:COVID-19 testing safeguards the health of children with medical complexity (CMC) through several key mechanisms, such as the implementation of clinical action plans and COVID-19-directed therapies. However, testing utility is limited by barriers to access and perceptions surrounding use. This study investigated associations between rurality and COVID-19 testing access, intent, motivators, and concerns for caregivers of CMC. METHODS:We conducted a cross-sectional survey (April - June 2022) of English- and Spanish-speaking caregivers of children with at least one complex chronic condition between ages 5-17 at an academic medical center in the Midwestern USA. Rurality was dichotomized using Rural-Urban Commuting Area codes. Outcomes represented COVID-19 testing access, intent, motivators, and concerns. Covariates included demographic and clinical characteristics. Unadjusted and adjusted logistic regression analyses examined associations between rurality and each outcome. RESULTS:Among 1,432 responses (response rate 49%), 359 (25%) were classified as rural. Respondents had varied education, income, and insurance levels. In the multivariable models, rural and urban caregivers reported similarly high testing access, but rural caregivers had significantly less testing intent (adjusted Odds Ratio [95% CI]: 0.53, [0.40, 0.71]). Notably, rural caregivers were significantly more likely to indicate "It will be difficult to get needed healthcare if my child has it" (2.49 [1.19, 5.18]). CONCLUSIONS:While rural and urban CMC caregivers reported generally high access and ease of COVID-19 testing, potentially modifiable factors exist to improve testing intention and decrease barriers, including communication regarding testing utility and timing as well as access to effective treatment response upon testing positive.

Introduction The 2021 Cures Act mandates caregiver access to their child ' s medical notes with few exceptions, yet fewer than 10% access notes during hospitalization. Caregiver review of real-time notes facilitates identification of safety concerns and may enhance patient safety in pediatric hospitals. This trial will evaluate the Bedside Notes intervention-a multifaceted approach to enhance real-time access to inpatient notes-and its effects on caregiver activation, hospital experience, reporting of safety concerns found in notes, and anxiety. Methods This 5-year, multisite randomized controlled trial will enroll 600 English and Spanish-speaking caregivers of hospitalized children <= 11 years old and 30 hospital staff across three hospitals. Caregivers will be randomized to usual care or the Bedside Notes intervention, which includes real-time inpatient note access via a bedside tablet, a caregiver orientation video, and a glossary of terms commonly found in notes. Our primary outcome is note access; secondary outcomes are caregiver activation, hospital experience, safety concerns, and anxiety, measured through electronic health record audits, surveys, and interviews .Discussion We hypothesize that Bedside Notes will significantly improve caregiver note access, activation, hospital experience, and safety concern reporting without increasing caregiver anxiety. This study will also identify barriers and facilitators to accessing inpatient notes and inform scalable implementation strategies for caregiver engagement in hospital safety. Findings will advance efforts to reduce errors and improve family-centered care in pediatric hospital settings.

Pediatric home health care represents a vital system of care for children with disability and medical complexity, encompassing services provided by family caregivers and nonfamily home health care providers and the use of durable medical equipment and supplies. Home health care is medically necessary for the physiologic health of children with disability and medical complexity and for their participation and function within home, school, and community settings. While the study of pediatric home health care in the United States has increased in the last decade, its research remains primarily methodologically limited to observational studies. Dedicated funding and research efforts are needed to transform American home health care research to address multifaceted outcomes valued by families and providers as well as payers and government programs. In this paper, we review the recent literature in pediatric home health care and then propose an actional agenda that could address its missing evidence base. We posit that pediatricians should partner with family caregiving experts and patients to advance knowledge about child and family health outcomes, home health care use, new models of care, and optimal approaches to education and training while also considering meaningful approaches to address disparities. The creation of an American pediatric home health care data-sharing consortium, patient registry, and reproducible access and quality measures is also needed. Most importantly, efforts should center on patient- and family-centered health priorities, with the goal of ensuring equitable outcomes for every child and family.

Pediatric nephrology is at a pivotal moment. As treatment advances have improved survival and clinical outcomes, families and clinicians increasingly call for a more holistic view of what it means to care well for children with kidney disease. Professional society mission statements, which emphasize a commitment to "optimal care for children with kidney disease," offer a foundation upon which to articulate that broader vision. In this perspective, we discuss what we think optimal care is not-an exclusive focus on cure, survival, and adult outcomes-and what optimal care is: promoting the flourishing of children with kidney disease and their families. Rooted in bioethics and gaining traction in medicine, a shift to promoting flourishing has significant implications for pediatric nephrology in clinical care, research and advocacy, and professionalism. To navigate this critical juncture in pediatric nephrology and improve the outcomes most important to patients, families, and clinicians, optimal care must center on flourishing. Now is the time to expand our focus from kidney disease well-treated to lives well-lived.

OBJECTIVES:The National Survey of Children's Health (NSCH) monitors child health trends and guides population-level policy and program initiatives; however, improving population health for children and youth with special health care needs (CYSHCN) remains challenging. This study used expert consensus to identify modifiable and high-impact NSCH indicators for CYSHCN. METHODS:Indicators representing the "10 Domains for Conceptualizing Health" framework for children with medical complexity were selected from NSCH through dual independent review. Using modified Delphi survey methods, those with lived experience and professional experts in CYSHCN health across the country rated each indicator according to (1) amenability to policy/program intervention and (2) potential magnitude of impact on CYSHCN health. Consensus indicators had at least 80% of respondents agreeing they were amenable to policy/program intervention, had "major" impact on individual health, and impacted "many" CYSHCN. Weighted frequencies of each indicator were calculated for US CYSHCN from 2019-2021 NSCH data. RESULTS:Over 3 survey rounds, 30 experts assessed 53 indicators, with round 2 and 3 response rates of 83% and 70%, respectively. Among 38 indicators perceived as amenable to policy/program intervention, 6 consensus indicators were identified, reflecting basic needs, health-related quality of life, and health system domains. Application of the consensus-derived indicators helped identify approximately 10 million families of CYSHCN potentially lacking basic needs, approximately 7 million families lacking adequate insurance access, and approximately 5 million lacking adequate mental/behavioral health service coverage or access. CONCLUSIONS:This study identified potentially modifiable, high-impact NSCH health indicators for CYSHCN. The results reflect opportunities to focus clinical, policy, and program interventions.

BACKGROUND AND OBJECTIVES:Experiences of disability-based discrimination in health care settings can harm patients by limiting access, which may lead to changes in health care use patterns. This study aimed to characterize disability-based discrimination in a nationally representative cohort of children with special health care needs (CSHCN) and evaluate its association with health care use, including forgone care. METHODS:This cross-sectional study of CSHCN used data from the 2021 and 2022 NSCH. Descriptive statistics compared key respondent demographics by exposure to disability-based discrimination. The primary outcome variable was forgone care in the past 12 months. Secondary outcomes included emergency department (ED) use and hospitalization in the past 12 months. A multivariable logistic regression determined the association of disability-based discrimination and health care use. RESULTS:In a weighted sample representing 14 million US CSHCN (unweighted n = 24 188), 11.0% experienced disability-based discrimination. Children who experienced discrimination were more likely to have public insurance (42.5% vs 36.8%; P < .001) and have a disability impacting everyday activities compared with those who did not experience discrimination (87.8% vs 59.6%; P < .001). In a multivariable model, disability-based discrimination was associated with an adjusted odds ratio (aOR) of 2.13 (95% CI 1.70-2.65) of experiencing forgone care and an aOR of 1.45 (95% CI 1.16-1.80) of an ED visit in the past 12 months. CONCLUSIONS:One in 10 CSHCN have experienced discrimination based on their disability. This discrimination is associated with over twice the odds of forgone necessary health care. Addressing disability-based discrimination may help improve health care access.

Background:To be usable, useful, and sustainable for families of children with medically complex conditions (CMC), digital interventions must account for the complex sociotechnical context in which these families provide care. CMC experience higher neighborhood socioeconomic disadvantage than other child populations, which has associations with CMC health. Neighborhoods may influence the structure and function of the array of caregivers CMC depend upon (ie, the caregiving network). Objective:Explore the structures/functions and barriers/facilitators of caregiving networks for CMC living in socioeconomically disadvantaged neighborhoods to inform the design of digital network interventions. Methods:We conducted 6 virtual focus groups with caregivers of CMC living in socioeconomically disadvantaged neighborhoods from 6 sites. Three groups included "primary caregivers" (parent/guardian), and 3 groups included "secondary caregivers" (eg, other family member, in-home nurse). We analyzed transcripts using thematic analysis. Results:Primary (n = 18) and secondary (n = 9) caregivers were most often female (81%) and reported a mean (SD) caregiving network size of 3.9 (1.60). We identified 4 themes to inform digital network intervention design: (1) Families vary in whether they prefer to be the locus of network communication, (2) external forces may override caregivers' communication preferences, (3) neighborhood assets influence caregiving network structure, and (4) unfilled or unreliably filled secondary caregiver roles creates vulnerability and greater demands on the primary caregiver. Discussion and Conclusion:Our results provide a foundation from which digital network interventions can be designed, highlighting that caregiving networks for CMC living in socioeconomically disadvantaged neighborhoods are influenced by family preferences, external forces, and neighborhood assets.