Predictors of psychosocial adaptation in children with CHD.

Survival of CHD has significantly improved, but children with CHD remain susceptible to neurodevelopmental and psychosocial impairments. Our goal was to investigate the association between socio-demographic factors and psychosocial adaptation for future intervention. A retrospective cross-sectional study of an independent children's hospital's records was conducted. Psychosocial adaptation was measured by the Pediatric Cardiac Quality of Life Inventory Psychosocial Impact score (range 0-50, higher score indicates greater psychosocial adaptation). Bivariate and regression analyses were performed to estimate relationships between Psychosocial Impact score and socio-demographic variables including Child Opportunity Index, family support, financial support, academic support, and extracurricular activities. A total of 159 patients were included. Compared to patients in high opportunity neighbourhoods, patients in low opportunity neighbourhoods had a 9.27 (95% confidence interval [-17.15, -1.40], p = 0.021) point lower Psychosocial Impact score, whereas patients in moderate opportunity neighbourhoods had a 15.30 (95% confidence interval [-25.38, -5.22], p = 0.003) point lower Psychosocial Impact score. Compared to patients with adequate family support, those with limited support had a 6.23 point (95% confidence interval [-11.82, -0.643], p = 0.029) lower Psychosocial Impact score. Patients in moderate opportunity neighbourhoods had a higher Psychosocial Impact score by 11.80 (95% confidence interval [1.68, 21.91], p = 0.022) when they also had adequate family support compared to those with limited family support. Our findings indicate that among children with CHD, psychosocial adaptation is significantly impacted by neighbourhood resources and family support structures. These findings identify possible modifiable and protective factors to improve psychosocial adaptation in this vulnerable population.

Paying Family Medical Caregivers for Children's Home Healthcare in Colorado: A Working Medicaid Model.

OBJECTIVE: To compare the characteristics and healthcare use of children with medical complexity who receive paid certified nursing assistant (CNA) care by a family member (family CNA) and by a traditional nonfamily member (nonfamily CNA). STUDY DESIGN: This was retrospective cohort study of children who received CNA care through Colorado's Medicaid paid family caregiving program between 2017 and 2019 by a home healthcare agency. We compared patient characteristics between the family CNA and nonfamily CNA groups. A multivariable Poisson regression model was used to compare hospitalization rates (days in the hospital per year), adjusting for patient age patient sex, nursing care, and complex chronic condition. RESULTS: Of 861 patients, 79% (n = 680) received family CNA care and 21% (n = 181) received nonfamily CNA care. Patient demographics and hospitalization did not differ between the groups, although patients who had family CNAs were less likely to receive additional nursing-level care (42% vs 60%, P < .01). Family and nonfamily CNA caregivers had similar characteristics, except that family CNA caregivers had substantially better 3-year retention (82% vs 9%, P < .01) despite lower average hourly pay ($14.60 vs $17.60 per hour, P < .01). Hospitalizations were rare (<10% of patients). In the adjusted model, patients who received family CNA care experienced 1 more hospitalized day per year, compared with patients who received nonfamily CNA care (P < .001). CONCLUSIONS: Paid family caregivers provided CAN-level care to children with medical complexity with a greater employee retention compared with nonfamily CNA caregivers, with marginally different hospitalization rates using a family-centered approach. This model may help address workforce shortages while also providing income to family caregivers.

Family and Provider Experiences With Longitudinal Care Coordination for Infants With Medical Complexity.

BACKGROUND: Parents in the neonatal intensive care unit (NICU) report low self-confidence managing their children's ongoing medical and social needs. While bedside nurses provide critical support for families throughout their NICU admission, there may be a role for nursing coordination throughout hospitalization, discharge, and in the transition to outpatient care. PURPOSE: This program evaluation explores parent and provider experiences of a novel longitudinal care coordination program for infants with medical complexity from the NICU through their first year of life post-discharge. METHODS: First, a sequential exploratory mixed-methods approach was used to evaluate parental experiences (n = 5 interviewed followed by n = 23 surveyed). Provider perspectives were elicited through semi-structured interviews (n = 8) and focus groups (n = 26 in 3 groups). RESULTS: Parent-reported benefits included frequent communication and personalized support that met families' and patients' evolving needs. Care coordinators, who were trained as nurses and social workers, developed longitudinal relationships with parents. This seemed to facilitate individualized support throughout the first year of life. Providers reported that smaller caseloads were central to the success of the program. IMPLICATIONS FOR PRACTICE AND RESEARCH: This longitudinal care coordination program can be used as a translatable model in NICUs elsewhere to address the unique needs of families of infants with medical complexity throughout the first year of life. Future implementations should consider how to expand program size while maintaining individualized supports. As the care coordinators are former NICU nurses and social workers, there may be a growing role for nursing coordination of care in the neonatal population.

Children's Hospital Transfers From Referring Emergency Departments: Which Patients Bypassed the Pediatric Emergency Department?

OBJECTIVES: Children are increasingly transferred from emergency departments (EDs) to children's hospitals for inpatient care. The existing literature on the use of direct admission (DA) specifically among pediatric patients transferred from referring EDs remains sparse.The objective of this study was to identify demographic, clinical, and contextual factors associated with the use of direct-to-inpatient versus ED-to-inpatient admission among patients transferred to children's hospitals from EDs. METHODS: This was a retrospective chart review of nontrauma patients admitted to inpatient services at a single tertiary children's hospital after interfacility transfer from EDs between July 1, 2016, and June 30, 2017. Characteristics of the patient population and referring EDs were described; unadjusted associations between rates of DA and the demographic, clinical, and contextual variables of encounters were performed; and a logistic model quantified the relevant associations as odds ratios (ORs). RESULTS: Of 2939 study encounters, 78% resulted in DA. Among White patients, private insurance was associated with decreased direct admission (OR, 0.5; 95% confidence interval [CI], 0.4-0.8). Younger patients and patients with respiratory diagnoses (OR, 3.9; 95% CI, 2.8-5.3) had increased likelihood of DA. Patients with gastrointestinal diagnoses had decreased likelihood of DA (OR, 0.6; 95% CI, 0.4-0.7). CONCLUSIONS: At a tertiary hospital with a high rate of DA among patients transferred from other EDs, we identified factors that were associated with the use of direct versus ED admission. Our results identify specific populations in which future work could inform admission processes for interfacility transfers.

A Retrospective Study of Children Transferred from General Emergency Departments to a Pediatric Emergency Department: Which Transfers Are Potentially Amenable to Telemedicine?

OBJECTIVE: To characterize children who experienced interfacility emergency department (ED) transfers with discharge home, and identify care potentially amenable to telemedicine in lieu of transfer. STUDY DESIGN: Retrospective cohort study (July 2016 to June 2017) of patients transferred from general EDs to an academic pediatric ED and discharged home. The primary outcome was care potentially amenable to telemedicine defined as pediatric emergency medicine (PEM) provider assessment without other in-person subspecialty evaluation, diagnostic evaluation available in a general ED (electrocardiogram, point-of-care, or urine tests), and/or referrals and medications available in a general ED. Analysis included descriptive and χ2 statistics. RESULTS: Of the 1733 patients transferred, 529 (31%) were discharged home and 22% of those discharged home had care potentially amenable to telemedicine. Patients amenable to telemedicine were more likely to be <2 years old (32% vs 17%; P = .002) and to have neurologic (29% vs 17%; P = .005), respiratory (16% vs 4%; P < .001), or urinary (5% vs 1%; P = .004) diagnoses than those whose care was not. Eight in 10 patients received their entire diagnostic evaluation before transfer and one-half received only a PEM provider assessment. An additional 281 cases were evaluated by a subspecialist in person, received routine imaging, or routine interventions. CONCLUSIONS: Children receiving care potentially amenable to telemedicine in lieu of transfer often received their entire diagnostic evaluation before transfer; PEM provider assessment was the mainstay of care after transfer. These findings have implications for informing telemedicine to improve access to PEM expertise and potentially decrease some interfacility transfers.

Integrated Multimodality Telemedicine to Enhance In-Home Care of Infants During the Interstage Period.

Performing interstage home monitoring using digital platforms (teleIHM) is becoming commonplace but, when used alone, may still require frequent travel for in-person care. We evaluated the acceptability, feasibility, and added value of integrating teleIHM with synchronous telemedicine video visits (VVs) and asynchronous video/photo sharing (V/P) during the interstage period. We conducted a descriptive program evaluation of patient-families receiving integrated multimodality telemedicine (teleIHM + VV + V/P) interstage care from 7/15/2018 to 05/15/2020. First, provider focus groups were conducted to develop a program logic model. Second, patient characteristics and clinical course were reviewed and analyzed with univariate statistics. Third, semi-structured qualitative interviews of family caregivers' experiences were assessed using applied thematic analysis. Within the study period, 41 patients received teleIHM + VV + V/P care, of which 6 were still interstage and 4 died. About half (51%) of patients were female and 54% were a racial/ethnic minority. Median age was 42 days old (IQR 25, 58) at interstage start, with a median of 113 total days (IQR 72, 151). A total of 551 VVs were conducted with a median 12 VVs (IQR 7, 18) per patient. Parents sent a median 2 pictures (IQR 0-3, range 0-82). Qualitatively, families reported an adjustment period to teleIHM, but engaged favorably with telemedicine overall. Families felt reassured by the oversight routine telemedicine provided and identified logistical and clinical value to VVs above teleIHM alone, while acknowledging trade-offs with in-person care. Integration of multimodality telemedicine is a feasible and acceptable approach to enhance in-home care during the interstage period.

Attributable Delay of Discharge for Children with Long-Term Mechanical Ventilation.

OBJECTIVE: To assess the reasons for discharge delays for children with long-term mechanical ventilation. STUDY DESIGN: Charts of children (0-18 years of age) with a new tracheostomy in the Pulmonary Habilitation Program at the Ann and Robert H. Lurie Children's Hospital of Chicago were retrospectively reviewed for demographic information, medical diagnoses, medical stability, discharge to home, reasons for discharge delay, and hours of staffed home nursing. All patients were discharged on mechanical ventilation. Discharge delay was defined as >10 days after medical stability. Hospital charges were analyzed and excess charges quantified beginning with the date of delay. Descriptive statistics and Pearson χ2 tests were used to compare nursing hours and demographics. RESULTS: Of 72 patients, 55% were male with mean age 1.8 years (SD 3.8) at tracheostomy placement. The most common long-term mechanical ventilation indication was chronic lung disease (n = 47, 65%); 54% had discharge delays, the majority were primarily due to lack of home nursing (62%), followed by delay of caregiver training (18%), caregiver health and social issues (8%), and delay in a transitional care facility bed (8%). Of the 39 delayed patients, 10% ($13 217 889) of hospital charges occurred during excess days with a median of $186 061 (IQR $117 661-$386 905) per patient. CONCLUSIONS: Over one-half of children discharged to the community from a large inpatient pediatric long-term mechanical ventilation program had a nonmedical delay of discharge home, most commonly because of home nurse staffing. This case series provides further evidence that limited availability of home nursing impedes efficient discharge and prolongs hospitalizations.

Caring for Children with Medical Complexity: Perspectives of Primary Care Providers.

OBJECTIVE: To describe typical care experiences and key barriers and facilitators to caring for children with medical complexity (CMC) from the perspective of community primary care providers (PCPs). STUDY DESIGN: PCPs participating in a randomized controlled trial of a care-coordination intervention for CMC were sent a 1-time cross-sectional survey that asked PCPs to (1) describe their experiences with caring for CMC; (2) identify key barriers affecting their ability to care for CMC; and (3) prioritize facilitators enhancing their ability to provide care coordination for CMC. PCP and practice demographics also were collected. RESULTS: One hundred thirteen of 155 PCPs sent the survey responded fully (completion rate = 73%). PCPs endorsed that medical characteristics such as polypharmacy (88%), multiorgan system involvement (84%), and rare/unfamiliar diagnoses (83%) negatively affected care. Caregivers with high needs (88%), limited time with patients and caregivers (81%), and having a large number of specialists involved in care (79%) were also frequently cited. Most commonly endorsed strategies to improve care coordination included more time with patients/caregivers (84%), summative action plans (83%), and facilitated communication (eg, e-mail, phone meetings) with specialists (83%). CONCLUSIONS: Community PCPs prioritized more time with patients and their families, better communication with specialists, and summative action plans to improve care coordination for this vulnerable population. Although this study evaluated perceptions rather than actual performance, it provides insights to improve understanding of which barriers and facilitators ideally might be targeted first for care delivery redesign.

A systematic comparison of the properties of clinically used angiotensin II type 1 receptor antagonists.

Angiotensin II type 1 receptor antagonists (ARBs) have become an important drug class in the treatment of hypertension and heart failure and the protection from diabetic nephropathy. Eight ARBs are clinically available [azilsartan, candesartan, eprosartan, irbesartan, losartan, olmesartan, telmisartan, valsartan]. Azilsartan (in some countries), candesartan, and olmesartan are orally administered as prodrugs, whereas the blocking action of some is mediated through active metabolites. On the basis of their chemical structures, ARBs use different binding pockets in the receptor, which are associated with differences in dissociation times and, in most cases, apparently insurmountable antagonism. The physicochemical differences between ARBs also manifest in different tissue penetration, including passage through the blood-brain barrier. Differences in binding mode and tissue penetration are also associated with differences in pharmacokinetic profile, particularly duration of action. Although generally highly specific for angiotensin II type 1 receptors, some ARBs, particularly telmisartan, are partial agonists at peroxisome proliferator-activated receptor-γ. All of these properties are comprehensively reviewed in this article. Although there is general consensus that a continuous receptor blockade over a 24-hour period is desirable, the clinical relevance of other pharmacological differences between individual ARBs remains to be assessed.

Medical Complexity, Language Use, and Outcomes in the Pediatric ICU.

OBJECTIVES: To determine whether use of a language other than English (LOE) would be associated with medical complexity, and whether medical complexity and LOE together would be associated with worse clinical outcomes. METHODS: The primary outcome of this single-site retrospective cohort study of PICU encounters from September 1, 2017, through August 31, 2022 was an association between LOE and medical complexity. Univariable and multivariable analyses were performed between demographic factors and medical complexity, both for unique patients and for all encounters. We investigated outcomes of initial illness severity (using Pediatric Logistic Organ Dysfunction-2), length of stay (LOS), days without mechanical ventilation or organ dysfunction using a mixed effects regression model, controlling for age, sex, race and ethnicity, and insurance status. RESULTS: There were 6802 patients and 10 011 encounters. In multivariable analysis for all encounters, Spanish use (adjusted odds ratio [aOR], 1.29; 95% confidence interval [CI], 1.11-1.49) and language other than English or Spanish (LOES) (aOR, 1.36; 95% CI, 1.02-1.80) were associated with medical complexity. Among unique patients, there remained an association between use of Spanish and medical complexity in multivariable analysis (aOR, 1.26; 95% CI, 1.05-1.52) but not between LOES and medical complexity (aOR, 1.30; 95% CI, 0.92-1.83). Children with medical complexity (CMC) who used an LOES had fewer organ dysfunction-free days (P = .003), PICU LOS was 1.53 times longer (P = .01), and hospital LOS was 1.45 times longer (P = .01) compared with CMC who used English. CONCLUSIONS: Use of an LOE was independently associated with medical complexity. CMC who used an LOES had a longer LOS.

Acute care utilization for ambulatory care-sensitive conditions among publicly insured children.

BACKGROUND: Although characteristics of preventable hospitalizations for ambulatory care-sensitive conditions (ACSCs) have been described, less is known about patterns of emergency and other acute care utilization for ACSCs among children who are not hospitalized. We sought to describe patterns of utilization for ACSCs according to the initial site of care and to determine characteristics associated with seeking initial care in an acute care setting rather than in an office. A better understanding of the sequence of health care utilization for ACSCs may inform efforts to shift care for these common conditions to the medical home. METHODS: We performed a retrospective analysis of pediatric encounters for ACSCs between 2017 and 2019 using data from the IBM Watson MarketScan Medicaid database. The database includes insurance claims for Medicaid-insured children in 10 anonymized states. We assessed the initial sites of care for ACSC encounters, which were defined as either acute care settings (emergency or urgent care) or office-based settings. We used generalized estimating equations clustered on patient to identify associations between encounter characteristics and the initial site of care. RESULTS: Among 7,128,515 encounters for ACSCs, acute care settings were the initial site of care in 27.9%. Diagnoses with the greatest proportion of episodes presenting to acute care settings were urinary tract infection (52.0% of episodes) and pneumonia (44.6%). Encounters on the weekend (adjusted odds ratio [aOR] 6.30, 95% confidence interval [CI] 6.27-6.34 compared with weekday) and among children with capitated insurance (aOR 1.55, 95% CI 1.54-1.56 compared with fee for service) were associated with increased odds of seeking care first in an acute care setting. CONCLUSIONS: Acute care settings are the initial sites of care for more than one in four encounters for ACSCs among publicly insured children. Expanded access to primary care on weekends may shift care for ACSCs to the medical home.

Children With Medical Complexity and Mental and Behavioral Disorders in the Emergency Department.

BACKGROUND: To assess the overlap and admission or transfer rate of children with chronic complex conditions (CCC) and with mental or behavioral health (MBH) disorders among children presenting to the emergency department (ED). METHODS: We performed a cross-sectional analysis from 2 data sources: hospitals in the Pediatric Health Information System (PHIS) and from a statewide sample (Illinois COMPdata). We included ED encounters 2 to 21 years and compared differences in admission and/or transfer between subgroups. Among patients with both a CCC and MBH, we evaluated if a primary MBH diagnosis was associated with admission or transfer. RESULTS: There were 11 880 930 encounters in the PHIS dataset; 0.7% had an MBH and CCC, 2.2% had an MBH, and 8.0% had a CCC. Patients with an MBH and CCC had a greater need for admission or transfer (86.5%) compared with patients with an MBH alone (57.7%) or CCC alone (52.0%). Among 5 362 701 patients in the COMPdata set, 0.2% had an MBH and CCC, 2.1% had an MBH, and 3.2% had a CCC, with similar admission or transfer needs between groups (61.8% admission or transfer with CCC and MBH; 42.8% MBH alone, and 27.3% with CCC alone). Within both datasets, patients with both a MBH and CCC had a higher odds of admission or transfer when their primary diagnosis was an MBH disorder. CONCLUSIONS: While accounting for a small proportion of ED patients, CCC with concomitant MBH have a higher need for admission or transfer relative to other patients.

Parental self-efficacy managing a child's medications and treatments: adaptation of a PROMIS measure.

PURPOSE: Self-efficacy is important for managing chronic conditions; however, its measurement in pediatric healthcare settings remains rare. The goal of this project was to adapt an existing disease-agnostic adult self-efficacy patient reported outcome (PRO) measure to enhance suitability of items for measuring the self-efficacy of parents that manage their children's health conditions. METHODS: We adapted the existing Patient-Reported Outcomes Measurement Information System® (PROMIS®) adult self-efficacy healthcare measure to parental voice. First, a targeted literature review informed rephrasing of the adult items and identification of new pediatric-specific content. The initial item pool was revised based on input from 12 multidisciplinary experts. Next cognitive interviews of adapted items were simultaneously conducted with English and Spanish-speaking parents of pediatric patients with a range of chronic and/or disabling conditions recruited from a Midwestern children's hospital to finalize the measure. RESULTS: Findings resulted in an initial item pool of 33 pediatric-specific items which were narrowed to 31 draft items based on expert input. Parent cognitive interview findings (N = 26) informed further item reduction resulting in a final measure consisting of 30 items representing nine domains. Fourteen items are relevant to children regardless of condition severity (e.g., health care information/decision making; symptom identification/management) and 16 items are relevant to children with specific health care needs (e.g., medication usage, equipment). CONCLUSION: We conducted a first step in developing a condition-agnostic, PRO measure of parental self-efficacy managing their children's chronic and/or disabling conditions that is acceptable and understandable to English and Spanish-speaking parents.

Self-efficacy, which is someone's confidence in completing a task, is important for managing a chronic health condition. Knowing parents' self-efficacy managing their children's health conditions may be an important step in supporting their children's health but no single measure is available for diverse sets of conditions. In this paper, we present the development of a new patient reported outcomes measure designed to assess self-efficacy of parents managing their child's chronic and/or disabling conditions. We found that the measure is both acceptable and understandable to English and Spanish speakers and may be useful to proactively identify parents in need of additional supports at hospital discharge or at the time of a new diagnosis.

Predictors for invasive home mechanical ventilation duration in bronchopulmonary dysplasia.

BACKGROUND: Children with bronchopulmonary dysplasia (BPD) who require invasive home mechanical ventilation (IHMV) are medically vulnerable and experience high caregiving and healthcare costs. Predictors for duration of IHMV in children with BPD remain unclear, which can make prognostication and decision-making challenging. METHODS: A retrospective cohort study of children with BPD requiring IHMV was conducted from independent children's hospital records (2005-2021). The primary outcome was IHMV duration, defined as time from initial discharge home on IHMV until cessation of positive pressure ventilation (day and night). Two new variables were included: discharge age corrected for tracheostomy (DACT) (chronological age at discharge minus age at tracheostomy) and level of ventilator support at discharge (minute ventilation per kg per day). Univariable Cox regression was performed with variables of interest compared to IHMV duration. Significant nonlinear factors (p < 0.05) were included in the multivariable analysis. RESULTS: One-hundred-and-nineteen patients used IHMV primarily for BPD. Patient median index hospitalization lasted 12 months (interquartile range [IQR] 8.0,14.4). Once home, half of the patients were weaned off IHMV by 36.0 months and 90% by 52.2 months. Being Hispanic/Latinx ethnicity (hazard ratio [HR] 0.14 (95% confidence interval [CI] 0.04, 0.53), p < 0.01) and having a higher DACT were associated with increased IHMV duration (HR 0.66 (CI 0.43, 0.98), p < 0.05). CONCLUSIONS: Disparity in IHMV duration exists among patients using IHMV after prematurity. Prospective multisite studies that further investigate new analytic variables, such as DACT and level of ventilator support, and address standardization of IHMV care are needed to create more equitable IHMV management strategies.

Access to Home- and Community-Based Services for Children with Disability: Academic Institutions' Role and Areas for Improvement.

OBJECTIVE: This project sought to describe provider- and parent-identified needs and barriers to obtaining home- and community-based services (HCBS) for children with disability (CWD) and to determine ways pediatric health care institutions can improve access to HCBS services. METHODS: In this exploratory sequential mixed methods evaluation, semi-structured interviews and focus groups were conducted with multidisciplinary providers and staff from an independent children's hospital, followed by a survey of English and Spanish-speaking parents of CWD. Data from interviews and surveys were then triangulated for overarching common themes regarding how pediatric health care institutions can better support access to HCBS. RESULTS: Among 382 parent respondents, 74.1% reported that their child needed a HCBS, most commonly physical/occupational/speech therapies, school-based support, and case management services. Two-thirds of parents reported at least one barrier to accessing HCBS and one-third experience >3 barriers. While multiple current institutional strengths were noted, internal weaknesses included lack of provider knowledge, staffing difficulties, and lack of protocols for identifying and tracking patients needing or receiving HCBS. External threats included requirements to entry for HCBS and transfer of care, with opportunities for improvement involving dissemination of information, funding support, and connection between providers/support staff and services. CONCLUSIONS: Parents of CWD identified HCBS as necessary for the health of this population, but multiple barriers to HCBS were identified by both parents and providers. Multiple internal and external opportunities for improvement relative to pediatric health care institutions were identified, suggesting a need for a comprehensive approach to ensure that CWD receive necessary HCBS.

Codesign of remote data collection for chronic management of pediatric home mechanical ventilation.

INTRODUCTION: Outpatient monitoring of children using invasive home mechanical ventilation (IHMV) is recommended, but access to care can be difficult. This study tested if remote (home-based) data collection was feasible and acceptable in chronic IHMV management. METHODS: A codesign study was conducted with an IHMV program, home nurses, and English- and Spanish-speaking parent-guardians of children using IHMV (0-17 years; n = 19). After prototyping, parents used a remote patient monitoring (RPM) bundle to collect patient heart rate, respiratory rate (RR), oxygen saturation, end-tidal carbon dioxide (EtCO2 ), and ventilator pressure/volume over 8 weeks. User feedback was analyzed using qualitative methods and the System Usability Scale (SUS). Expected marginal mean differences within patient measures when awake, asleep, or after a break were calculated using mixed effects models. RESULTS: Patients were a median 2.9 years old and 11 (58%) took breaks off the ventilator. RPM data were entered on a mean of 83.7% (SD ± 29.1%) weeks. SUS scores were 84.8 (SD ± 10.5) for nurses and 91.8 (SD ± 10.1) for parents. Over 90% of parents agreed/strongly agreed that RPM data collection was feasible and relevant to their child's care. Within-patient comparisons revealed that EtCO2 (break-vs-asleep 2.55 mmHg, d = 0.79 [0.42-1.15], p < .001; awake-vs-break 1.48, d = -0.49 [0.13-0.84], p = .02) and RR (break-vs-asleep 16.14, d = 2.12 [1.71-2.53], p < .001; awake-vs-break 3.44, d = 0.45 [0.10-0.04], p = .03) were significantly higher during ventilator breaks. CONCLUSIONS: RPM data collection in children with IHMV was feasible, acceptable, and captured clinically meaningful vital sign changes during ventilator breaks, supporting the clinical utility of RPM in IHMV management.

The Associations of Child's Clinical Conditions and Behavioral Problems with Parenting Stress among Families of Preschool-Aged Children: 2018-2019 National Survey of Child Health.

To understand parental stress resulting from parenting young children, the current literature has primarily focused on families of children with clinical conditions, but has placed far less attention on the general population. The aim of this study was to examine parenting stress related to children's clinical conditions and behavioral problems in a nationally representative sample of US children aged 3 to 5 years. The study sample included 8454 children aged 3 to 5 years and their parents who participated in the 2018-2019 US National Survey of Child Health (NSCH). Using online/paper NSCH questionnaires, parents reported their children's special health care needs (SHCN), clinically diagnosed mental, emotional, developmental, and behavioral (MEDB) problems (e.g., anxiety problem, developmental delay), and externalizing behaviors. Parents also reported the frequency of feeling aggravated from parenting the participating child as an indicator of elevated parenting stress. In the sample, the prevalence of elevated parenting stress was 5.1% overall (95% CI = 4.2, 6.0); however, it was significantly higher among parents of children with SHCN (20.8%; 95% CI = 16.7, 24.9), with MEDB problems (24.8%; 95% CI = 19.9, 29.8), and with externalizing behavior problems (14.7%; 95% CI = 11.8, 17.6). A multivariable logistic regression model showed that elevated parenting stress was associated with the child's SHCN (adjusted odds ratio [AOR] = 2.3; 1.3, 3.9), MEDB problems (AOR = 4.8; 95% CI = 2.5, 9.1), and externalizing behavior problems (AOR = 5.4; 95% CI = 3.1, 9.4). Even in children without SHCN or MEDB problems, externalizing behavior problems were associated with elevated parenting stress (AOR = 6.4; 95% CI = 3.3, 12.7). The findings call for greater attention to subclinical or yet to be diagnosed externalizing behavior problems among the general preschool-aged child population and their underestimated impact on parenting stress.

Characteristics of Medicaid Policies for Children With Medical Complexity by State: A Qualitative Study.

Importance: Families of children with medical complexity (CMC) report barriers to accessing affordable coverage for the full range of services their children may need to optimize their health outcomes. Medicaid enrollment through medical need-based eligibility mechanisms can help cover these service gaps. Understanding state-by-state variation in how CMC access Medicaid may allow policy makers and pediatricians to help families navigate needed services for CMC. Objective: To clarify how eligibility and coverage for CMC differ for Medicaid beneficiaries across states with different policies and managed care penetration. Design, Setting, and Participants: This qualitative study used semistructured interviews with state Medicaid representatives from 23 states and Washington, DC, from February 1, 2020, to March 1, 2021. Enrollment pathways and coverage processes were discussed. Interviews were transcribed and content analysis was performed. Participants included Medicaid directors, a designee, or a state-identified policy leader with expertise in and/or responsibility for child-focused programs. Exposures: State variation in Medicaid eligibility and delivery policies. Main Outcomes and Measures: Eligibility pathways and coverage mechanisms for CMC in each state. Results: A total of 43 informants from 23 states and Washington, DC, participated, which permitted data collection regarding almost half of the US. Four distinct eligibility pathways were characterized, with 3 specific to CMC, and the pathways that include the presence of waiting lists were distinguished. In addition, 3 coverage types at the state level were identified, consisting of fee-for-service, Medicaid managed care, or both. Two main connections between pathways and coverage mechanisms for CMC were described. Conclusions and Relevance: The findings of this qualitative study suggest that state patterns in Medicaid eligibility and coverage for CMC have implications for access, including some states with substantial waiting periods for these families. Future work is needed to understand the implications of these differential Medicaid medical need-based eligibility pathways and subsequent coverage mechanisms on use of health care resources and expenditures, as well as considerations regarding challenges families of CMC face due to state-by-state variation.