Search

Objective: To estimate the prevalence of chronic conditions among children admitted to U.S. pediatric intensive care units and to assess whether patients with complex chronic conditions experience pediatric intensive care unit mortality and prolonged length of stay risk beyond that predicted by commonly used severity-of-illness risk-adjustment models.Design, Setting, and Patients: Retrospective cohort analysis of 52,791 pediatric admissions to 54 U.S. pediatric intensive care units that participated in the Virtual Pediatric Intensive Care Unit Systems database in 2008.Measurements: Hierarchical logistic regression models, clustered by pediatric intensive care unit site, for pediatric intensive care unit mortality and length of stay >15 days. Standardized mortality ratios adjusted for severity-of-illness score alone and with complex chronic conditions.Main Results: Fifty-three percent of pediatric intensive care unit admissions had complex chronic conditions, and 18.5% had noncomplex chronic conditions. The prevalence of these conditions and their organ system subcategories varied considerably across sites. The majority of complex chronic condition subcategories were associated with significantly greater odds of pediatric intensive care unit mortality (odds ratios 1.25-2.9, all p values < .02) compared to having a noncomplex chronic condition or no chronic condition, after controlling for age, gender, trauma, and severity-of-illness. Only respiratory, gastrointestinal, and rheumatologic/orthopedic/psychiatric complex chronic conditions were not associated with increased odds of pediatric intensive care unit mortality. All subcategories were significantly associated with prolonged length of stay. All noncomplex chronic condition subcategories were either not associated or were negatively associated with pediatric intensive care unit mortality, and most were not associated with prolonged length of stay, compared to having no chronic conditions. Among this group of pediatric intensive care units, adding complex chronic conditions to risk-adjustment models led to greater model accuracy but did not substantially change unit-level standardized mortality ratios.Conclusions: Children with complex chronic conditions were at greater risk for pediatric intensive care unit mortality and prolonged length of stay than those with no chronic conditions, but the magnitude of risk varied across subcategories. Inclusion of complex chronic conditions into models of pediatric intensive care unit mortality improved model accuracy but had little impact on standardized mortality ratios. [ABSTRACT FROM AUTHOR]

Special health care needs in the very young are on the rise. Understanding how health care systems provide service for these children is essential. We report on the prevalence of infants and young children with special health care needs (IYCSHCN), and delineate their access to health care, utilization, expenditures, and the financial impact on families. Using data from the 2001 and 2002 Medical Expenditure Panel Survey, we performed statistical analysis on the prevalence, demographics, utilization rates, expenditures, and out-of-pocket expenses for IYCSHCN to determine the impact on families, medical systems, and health care providers. An estimated 2.6 million children younger than 6 in the United States have special health care needs. These children have greater health care service needs as demonstrated by significantly higher utilization rates for all services. Although IYCSHCN were more likely to have a usual source of care, they were more likely than other children to have access issues. As expected, health care expenditures were markedly higher for IYCSHCN ($2923 per year) than those of their healthy peers ($770 per year). Families of IYCSHCN disproportionately felt the financial burden of health care, with more than 10% of families reporting out-of-pocket health care expenditures above $500 annually. The burden of disease and health care expenditures for families of IYCSHCN is substantial. Certain characteristics, such as having insurance, help protect families from high out-of-pocket expenses. Individuals who provide health care and educational services should be aware of the financial impact of service utilization and the issues faced by families in terms of access to care and out-of-pocket expenses. Health care policy changes may be necessary to ensure that needed care for IYCSHCN is accessible and affordable. [ABSTRACT FROM AUTHOR]

CONTEXT: Because of their elevated need for services, health insurance is particularly important for children with special health care needs. In this article we assess how well the current system is meeting the insurance needs of children with special health care needs and how emerging trends in health insurance may affect their well-being. METHODS: We begin with a review of the evidence on the impact of health insurance on the health care experiences of children with special health care needs based on the peer-reviewed literature. We then assess how well the current system meets the needs of these children by using data from 2 editions of the National Survey of Children With Special Health Care Needs. Finally, we present an analysis of recent developments and emerging trends in the health insurance marketplace that may affect this population. RESULTS: Although a high proportion of children with special health care needs have insurance at any point in time, nearly 40% are either uninsured at least part of the year or have coverage that is inadequate. Recent expansions in public coverage, although offset in part by a contraction in employer-based coverage, have led to modest but significant reductions in the number of uninsured children with special health care needs. Emerging insurance products, including consumer-directed health plans, may expose children with special health care needs and their families to greater financial risks. CONCLUSIONS: Health insurance coverage has the potential to secure access to needed care and improve the quality of life for these children while protecting their families from financially burdensome health care expenses. Continued vigilance and advocacy for children and youth with special health care needs are needed to ensure that these children have access to adequate coverage and that they fare well under health care reform. [ABSTRACT FROM AUTHOR]

OBJECTIVE: The objective of this study was to compare the receipt of preventive health services for children with and without special health care needs and to identify predictors of these health services for children with special health care needs using nationally representative data. METHODS: Data from the 2002 and 2003 Medical Expenditure Panel Surveys were analyzed. A total of 18,279 children aged 3 to 17 years were included in our study. The Child Preventive Health Supplement was used to identify caregiver recall of specific health screening measures and anticipatory guidance during the previous 12 months. Odds ratios were calculated for predictive factors of preventive services for children with special health care needs. RESULTS: The prevalence of special health care needs in children aged 3 to 17 years was 21.6%. Based on caregiver reports, 87.5% of children with special health care needs had > or = 1 health screening measure checked in the past year compared with 73.1% of children without special health care needs. Receipt of > or = 1 topic of anticipatory guidance was reported for 69.8% of children with special health care needs compared with 55.2% of children without special health care needs. Black and Hispanic caregivers of children with special health care needs were more likely than others to report receipt of all 6 categories of anticipatory guidance measured in this study. CONCLUSIONS: We found that caregivers of children with special health care needs were more likely to report receipt of anticipatory guidance and health screening than were caregivers of children without special health care needs. Although a majority of these caregivers reported receiving some health screening and anticipatory guidance on an annual basis, there are clear gaps in the delivery of preventive health services. This study identifies areas for improvement in the delivery of preventive health services for children with special health care needs and children in general. [ABSTRACT FROM AUTHOR]

Objective: The aim of this study was to evaluate the predictive accuracy of the Pittsburgh Impairment Testing Tool. It was hypothesized that the Pittsburgh Impairment Testing Tool would have a good overall accuracy (≥80%) for predicting both ambulation and transfer ability and that overall accuracy of the Pittsburgh Impairment Testing Tool would be higher than that of other scales., Design: A retrospective chart review was used to classify 409 adults with spina bifida according to seven neurological scales. A Naïve Bayes classifier was used to obtain accuracy estimates for predicting both ambulation and transfer ability as a function of each scale., Results: The Pittsburgh Impairment Testing Tool was the only scale demonstrating >80% overall accuracy for predicting both ambulation and transfer ability. While several scales demonstrated ≥80% overall accuracy in predicting transfer ability, none were useful in predicting inability to transfer. Inability to transfer was difficult for all tools to predict., Conclusions: The Pittsburgh Impairment Testing Tool demonstrated good overall accuracy for predicting both ambulation and transfer ability. Sensory and anatomic levels were less useful than motor level in predicting functional ability., Competing Interests: Financial disclosure statements have been obtained, and no conflicts of interest have been reported by the authors or by any individuals in control of the content of this article., (Copyright © 2024 The Author(s). Published by Wolters Kluwer Health, Inc.)

Objective: Direct admission (DA) to hospital can reduce emergency department (ED) utilization by bypassing the ED during the admission process. We implemented a DA program across 3 health systems and compared timeliness of care, family experience of care, and post-admission clinical deterioration among children admitted via DA versus the ED after their clinic was randomized to begin the DA program., Methods: Using a stepped-wedge design, 69 primary and urgent care clinics were randomized to 1 of 4 time points to begin a voluntary DA program, February 1, 2020 to April 30, 2023. Outcomes in children <18 years admitted with 7 common medical diagnoses were compared using adjusted logistic or linear regression., Results: A total of 2599 children were admitted with eligible diagnoses during the study period , including 145 children admitted directly and 1852 admitted through EDs after program implementation at their clinic. Median age was 2.8 (interquartile range: 1.1-6.8) years, 994 (49.8%) were female, and 1324 (66.3%) were Medicaid-insured. Adjusted regression analyses showed that if each child was admitted via DA versus the ED, average time to initial clinical assessment was 3.1 minute (95% confidence interval: 1.7-4.5) slower, whereas time to initial therapeutic management was 49.6 minutes faster on average (95% confidence interval: 30.3.2-68.9). There were no significant differences in time to initial diagnostic testing or rates of post-admission clinical deterioration., Conclusions: Compared with ED admission, DA appears equally safe and acceptable to families, and may be associated with a significantly shorter time to initial therapeutic management with modestly longer time to initial clinical assessment.

Aim: To qualitatively assess the impact of disability-based discrimination in healthcare on the parents of children with medical complexity (CMC)., Method: In this qualitative study, we conducted in-depth, semi-structured interviews with the parents of CMC. Data collection and analysis occurred iteratively; constant comparison methods were used to identify themes describing the impact of disability-based discrimination in pediatric healthcare on the parents of CMC., Results: Thirty participants from 15 US states were interviewed. Four themes were developed regarding the impact of disability-based discrimination in healthcare on parents. The themes were: (1) discrimination leads to a loss of trust in healthcare providers; (2) discrimination increases the burden of caregiving; (3) discrimination impacts parental well-being; and (4) racism and poverty-based discrimination amplifies disability-based discrimination., Interpretation: The experience of discrimination toward their child results in loss of trust and therapeutic relationship between provider and parent, causes increased burden to the family, and contributes to decreased parental well-being. These experiences are magnified in minoritized families and in families perceived to have a lower socioeconomic status based on insurance type., (© 2024 The Authors. Developmental Medicine & Child Neurology published by John Wiley & Sons Ltd on behalf of Mac Keith Press.)

Background: Despite the high prevalence of disability and the frequency with which people with disabilities encounter the health care system, physicians report inadequate knowledge regarding caring for their patients with disabilities., Objective: To determine the number and type of disability-related competencies in the Accreditation Council for Graduate Medical Education's Milestones 2.0., Design: Cross-sectional analysis of publicly available data to identify, via key word search, the presence of disability-related competencies using disability-related terms derived from the World Health Organization's International Classification of Functioning Disability and Health., Setting: Accreditation Council for Graduate Medical Education's Milestones 2.0., Participants: N/A INTERVENTIONS: N/A MAIN OUTCOME MEASURE: Presence of disability-related competencies., Results: Over one-third (37.5%) of specialties had zero disability-related competencies. Nineteen (59.4%) included an Interpersonal and Communication Skills Milestone that mentions disability as a potential barrier to communication. No specialties had Systems-Based Practice or Practice-Based Learning and Improvement disability-related competencies. Physical medicine and rehabilitation (PM&R) had six disability-related competencies, preventive medicine occupational and environmental medicine had three, and otolaryngology and transition year each had two., Conclusions: A minority of medical and surgical specialties had disability-related competencies outside of the Interpersonal and Communication domain. With the rising prevalence of disability and the lack of physicians with expertise in the care of people with disability, the time is now to integrate disability competencies into residencies, especially for the primary care specialties., (© 2024 The Author(s). PM&R published by Wiley Periodicals LLC on behalf of American Academy of Physical Medicine and Rehabilitation.)

Objective: To investigate primary care practice ownership and specialist-use patterns for commercially insured children with disabilities., Data Sources and Study Setting: A national commercial claims database and the Health Systems and Provider Database from 2012 to 2016 are the data sources for this study., Study Design: This cross-sectional, descriptive study examines: (1) the most visited type of pediatric primary care physician and practice (independent or system-owned); (2) pediatric and non-pediatric specialist-use patterns; and (3) how practice ownership relates to specialist-use patterns., Data Collection/extraction Methods: This study identifies 133,749 person-years of commercially insured children with disabilities aged 0-18 years with at least 24 months of continuous insurance coverage by linking a national commercial claims data set with the Health Systems and Provider Database and applying the validated Children with Disabilities Algorithm., Principal Findings: Three-quarters (75.9%) of children with disabilities received their pediatric primary care in independent practices. Nearly two thirds (59.6%) used at least one specialist with 45.1% using nonpediatric specialists, 28.8% using pediatric ones, and 17.0% using both. Specialist-use patterns varied by both child age and specialist type. Children with disabilities in independent practices were as likely to see a specialist as those in system-owned ones: 57.1% (95% confidence interval [95% CI] 56.7%-57.4%) versus 57.3% (95% CI 56.6%-58.0%), respectively (p = 0.635). The percent using two or more types of specialists was 46.1% (95% CI 45.4%-46.7%) in independent practices, comparable to that in systems 47.1% (95% CI 46.2%-48.0%) (p = 0.054). However, the mean number of specialist visits was significantly lower in independent practices than in systems-4.0 (95% CI 3.9%-4.0%) versus 4.4 (95% CI 4.3%-4.6%) respectively-reaching statistical significance with p < 0.0001., Conclusions: Recognizing how privately insured children with disabilities use pediatric primary care from pediatric and nonpediatric primary care specialists through both independent and system-owned practices is important for improving care quality and value., (© 2023 Health Research and Educational Trust.)

Competing Interests: CONFLICT OF INTEREST DISCLOSURES: The authors have indicated they have no potential conflicts of interest relevant to this article to disclose.

Objective: Understanding the types of functional challenges faced by adolescents and young adults with disabilities (AYA-WD) can help payers, clinicians, community-based service providers, and policymakers recognize and meet needs. This paper describes state-level prevalence rates for 1) AYA-WD overall and for 2) impairment types singly and in combinations; and 3) examines how rates may differ between those insured by Medicaid versus commercial insurance., Methods: This descriptive study uses Colorado's All Payer Claims Dataset 2014-2018 to identify insured 10- to 26-year-olds (Medicaid only: 333,931; commercially only: 392,444). It then applies the previously validated Children with Disabilities Algorithm (CWDA) and its companion, the Diagnosis-to-Impairment-Type Algorithm (DITA), to compare state-level prevalence rates by insurance source for disability overall and for each of five impairment types singly and in combination., Results: Disability prevalence was greater among the Medicaid-insured AYA-WD by +7.6% points (pp)-Medicaid: 11.9% (47,654/333,931), commercial: 4.3% (16,907/392,444). Most AYA-WD had a single impairment, but the prevalence of AYA-WD with two or more impairments was greater among the Medicaid-insured than the commercially insured (+9.9 pp; Medicaid: 33.5% [15,963/47,654], commercial: 23.7% [3992/16, 907]), as was the prevalence of impairment types that were physical (+6.7 pp; Medicaid: 54.7% [26,054/47,654], commercial: 48.0% [8121/16,907]); developmental (+4.1 pp; Medicaid: 35.4% [16,874/47,654], commercial: 31.3% [5290/16,907]); psychiatric (+6.7 pp; Medicaid 21.3% [10,175/47,654], commercial: 14.6% [2470/16,907]), and intellectual (+9.3 pp; Medicaid: 26.2% [12,501/47,654], commercial: 16.9% [2858/16,907])., Conclusions: CWDA and DITA can be used to understand the rates at which impairment types and combinations occur in a population with childhood-onset disabilities., Competing Interests: Declaration of Competing Interest The authors have indicated that they have no conflicts of interest to disclose., (Copyright © 2024 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved.)

Competing Interests: Declaration of Competing Interest The authors have no declarations of interest to disclose.

Background: Acute flaccid myelitis (AFM) is a childhood illness characterized by sudden-onset weakness impairing function. The primary goal was to compare the motor recovery patterns of patients with AFM who were discharged home or to inpatient rehabilitation. Secondary analyses focused on recovery of respiratory status, nutritional status, and neurogenic bowel and bladder in both cohorts., Methods: Eleven tertiary care centers in the United States performed a retrospective chart review of children with AFM between January 1, 2014, and October 1, 2019. Data included demographics, treatments, and outcomes on admission, discharge, and follow-up visits., Results: Medical records of 109 children met inclusion criteria; 67 children required inpatient rehabilitation, whereas 42 children were discharged directly home. The median age was 5 years (range 4 months to 17 years), and the median time observed was 417 days (interquartile range = 645 days). Distal upper extremities recovered better than the proximal upper extremities. At acute presentation, children who needed inpatient rehabilitation had significantly higher rates of respiratory support (P < 0.001), nutritional support (P < 0.001), and neurogenic bowel (P = 0.004) and bladder (P = 0.002). At follow-up, those who attended inpatient rehabilitation continued to have higher rates of respiratory support (28% vs 12%, P = 0.043); however, the nutritional status and bowel/bladder function were no longer statistically different., Conclusions: All children made improvements in strength. Proximal muscles remained weaker than distal muscles in the upper extremities. Children who qualified for inpatient rehabilitation had ongoing respiratory needs at follow-up; however, recovery of nutritional status and bowel/bladder were similar., (Copyright © 2023 Elsevier Inc. All rights reserved.)

Background and Objectives: Disability-based discrimination in health care can lead to low quality of care, limited access to care, and negative health consequences. Yet, little is known regarding the experiences of disability-based discrimination in health care for children with medical complexity and disability. An understanding of disability-based discrimination in pediatrics is needed to drive change and improve care., Methods: We conducted in-depth, semistructured interviews with caregivers of children with medical complexity and disability. Participants were purposefully recruited through national advocacy and research networks. Interviews were conducted via video conferencing, recorded, and transcribed. Data collection and analysis occurred iteratively. An inductive thematic analysis approach with constant comparison methods was used to identify themes that form a conceptual framework of disability-based discrimination in health care., Results: Thirty participants from diverse backgrounds were interviewed. Six themes emerged, forming a conceptual framework of disability-based discrimination in health care. Three themes described drivers of discrimination: lack of clinician knowledge, clinician apathy, and clinician assumptions. Three themes described manifestations of discrimination: limited accessibility to care, substandard care, and dehumanization., Conclusions: Children with medical complexity may face disability-based discrimination in health care. Themes describing the drivers and manifestations of discrimination offer a conceptual framework of disability-based discrimination. Understanding the drivers and acknowledging perceived manifestations can provide insight into improving patient care for children with disabilities., (Copyright © 2023 by the American Academy of Pediatrics.)

Pediatric rehabilitation medicine (PRM) physicians are subspecialists in the field of physical medicine and rehabilitation trained to promote the health and function of children with disabilities (CWD) across their lifespans. Management strategies employed include prescribing medications, therapy, and adaptive equipment (braces and mobility devices) to optimize function and allow participation. PRM physicians collaborate with other providers to mitigate the negative consequences of health conditions and injuries. Their work is interdisciplinary because CWD with either temporary or permanent impairments needs treatments, services, and support that extend beyond the clinical environment. Owing to this, PRM physicians are essential members of the health neighborhood for CWD., (Copyright © 2023 Elsevier Inc. All rights reserved.)

Objective: The purpose of this secondary analysis was to assess the role of hydrocephalus on neurodevelopmental outcomes in a cohort of school-age children enrolled in the Management of Myelomeningocele Study (MOMS) clinical trial., Methods: The sample analyzed in this report consisted of 150 of 183 children aged 5-10 years (mean ± SD 7 years 8 months ± 1.2) who were randomly assigned between 20 and 26 weeks of gestational age to undergo either prenatal or postnatal surgery and were enrolled in the school-age follow-up study of MOMS. These 150 children (76 prenatal and 74 postnatal) were placed into three groups: no hydrocephalus (n = 22), unshunted hydrocephalus (n = 31), and shunted hydrocephalus (n = 97). Comparisons were made on the basis of measures of adaptive behavior, intelligence, reading and math skills, verbal and nonverbal memory, fine motor dexterity, and sensorimotor skills. Parent ratings of executive functions, inattention, and hyperactivity-impulsivity were also compared., Results: There were no statistically significant differences in neurodevelopmental outcomes between the groups with no hydrocephalus and unshunted hydrocephalus, or between the prenatal and postnatal groups with shunted hydrocephalus, so these groups were combined (no/unshunted vs shunted hydrocephalus). The no/unshunted group showed significantly better performance (p < 0.05) than the shunted group in terms of adaptive behavior, intelligence, verbal and nonverbal memory, reading skills (but not math), fine motor dexterity, sensorimotor skills (but not visual-motor integration), and inattention (but not hyperactivity-impulsivity or executive function ratings). An assessment of the prenatal surgery group showed that the combined no/unshunted group performed better than the shunted group in terms of adaptive behavior and verbal memory skills. Both the prenatal and postnatal surgery subgroups with unshunted hydrocephalus performed as well as the group with no hydrocephalus despite significantly enlarged ventricles., Conclusions: Although the primary assessment of school-age outcomes in the MOMS clinical trial did not show better adaptive behavior and cognitive skills in the prenatal group, hydrocephalus and shunting were associated with poorer neurodevelopmental outcomes (both prenatal and postnatal groups). Disease severity and dynamic changes in hydrocephalus status may be the primary factors in the need for shunting and a major determinant of adaptive behavior and cognitive outcomes after prenatal surgery.

Objective: To assess the number of days that children experienced a health care encounter and associations between chronic condition types and health care encounters., Methods: Retrospective analysis of data from 5,082,231 children ages 0 to 18 years enrolled in Medicaid during 2017 in 12 US states contained in the IBM Watson Marketscan Medicaid Database. We counted and categorized enrollees' encounter days, defined as unique days a child had a health care visit, by type of health service. We used International Classification of Disease-10 diagnosis code categories from Agency for Healthcare Research and Quality's Chronic Condition Indicator System to identify chronic mental and physical health conditions., Results: Median (interquartile range [IQR]) annual encounter days was 6 (2-13). Children in the 91st to 98th and ≥99th percentiles for encounter days experienced a median of 49 (IQR 38-70) and 229 (IQR 181, 309) days, respectively; these children accounted for 52.6% of days for the cohort. As encounter days increased from the 25th to >90th percentile, the percentage of children with co-existing mental and physical health conditions increased from <0.1% to 47.4% (P < .001). Outpatient visits accounted for a total of 68.3% and 62.2% of days for children the 91st to 98th and ≥99th percentiles., Conclusion: Ten percent of children enrolled in Medicaid averaged health care encounters at least 1 day per week; 1% experienced health care encounters on most weekdays. Further investigation is needed to understand how families perceive frequent health care encounters, including how to facilitate their children's care in the most feasible way., (Copyright © 2022 Academic Pediatric Association. All rights reserved.)

People with disabilities disproportionately experience negative health outcomes. Purposeful analysis of information on all aspects of the experience of disability across individuals and populations can guide interventions to reduce health inequities in care and outcomes. Such an analysis requires more holistic information on individual function, precursors and predictors, and environmental and personal factors than is systematically collected in current practice. We identify 3 key information barriers to more equitable information: (1) a lack of information on contextual factors that affect a person's experience of function; (2) underemphasis of the patient's voice, perspective, and goals in the electronic health record; and (3) a lack of standardized locations in the electronic health record to record observations of function and context. Through analysis of rehabilitation data, we have identified ways to mitigate these barriers through the development of digital health technologies to better capture and analyze information about the experience of function. We propose 3 directions for future research on using digital health technologies, particularly natural language processing (NLP), to facilitate capturing a more holistic picture of a patient's unique experience: (1) analyzing existing information on function in free text documentation; (2) developing new NLP-driven methods to collect information on contextual factors; and (3) collecting and analyzing patient-reported descriptions of personal perceptions and goals. Multidisciplinary collaboration between rehabilitation experts and data scientists to advance these research directions will yield practical technologies to help reduce inequities and improve care for all populations., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2022 Newman-Griffis et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

Objective: Provide an up-to-date description of the well-being of families and caregivers of children with disability and medical complexity at the national level., Methods: We performed a secondary analysis of the 2016-2019 National Survey of Children's Health and divided the sample based on a child's disability and medical complexity status: children with no special health care needs (non-CSHCN), children with special health care needs (CSHCN), CSHCN with significant disabilities (CSHCN-SD), and children with medical complexity (CMC). Outcomes included survey items assessing 1) caregiver emotional well-being, 2) family functioning, and 3) economic adversity. We conducted multivariable logistic regression analyses to examine associations between child disability and medical complexity status with study outcomes., Results: Among 131,774 survey responses, CSHCN-SD (weighted n = 4.2 million) and CMC (n =1.1 million) disproportionately reported adverse outcomes for every measure of well-being. Notably, caregivers of CSHCN-SD and CMC were more likely to report frequently feeling bothered (aOR 5.0 and 6.3, respectively) and angry (aOR 3.0 and 3.1) with their child than non-CSHCN caregivers. Families of CSHCN-SD and CMC had 40% lower odds of endorsing all aspects of family resilience and more likely to report three or more adverse childhood experiences (aOR 3.3 and 3.7) than non-CSHCN families. CSHCN-SD and CMC families were also more likely to experience difficulty covering basics (aOR, 2.6 and 3.3) and report caregivers changing jobs due to their child's care (aOR, 3.1 and 5.0)., Conclusions: Development and testing of interventions specifically targeting the well-being of CSHCN-SD and CMC families and caregivers is needed., (Copyright © 2022 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved.)

Background: Achieving equitable medical care for people with disabilities is a complex challenge with emphasis often placed on the need for improved physician knowledge and cultural competence. Physical medicine and rehabilitation (PM&R) is a specialty dedicated to maximizing patient function, where a focus on working with and learning from patients with complex disabilities informs physician training and patient care., Objective: The purpose of this study was to assess barriers to equitable care in PM&R clinics through a structural checklist and semi-structured interviews with clinic staff and physicians., Methods: We used qualitative analysis with a grounded theory approach to develop a unified explanation of how existing clinic processes and provider attitudes affect equitable access to medical care., Results: We found physicians comfortable with and respectful of patient differences who described leveraging unpaid time and creativity to navigate structural, resource, and awareness barriers. Staff and physicians described current barriers as negatively affecting quality of care, clinic efficiency, and, in some cases, patient and staff safety., Conclusion: Our results suggest that high levels of physician disability-related knowledge and cultural competence may be insufficient to the challenge of achieving equitable care., (Copyright © 2022 Elsevier Inc. All rights reserved.)

Objectives: This study used a spina bifida electronic medical record and the National Spina Bifida Patient Registry to explore the relationship between neurosurgical/orthopedic surgeries and other variables on ambulation and transfer ability over time in individuals with spina bifida., Design: This study was an analysis of longitudinal data collected within the National Spina Bifida Patient Registry and spina bifida electronic medical record. Logistic regression models were used to determine which variables were associated with ambulation/transfer ability in the myelomeningocele (MMC) and non-MMC populations., Results: Longitudinal data from 806 individuals were collected. In the MMC group, decreased ambulation ability was associated with higher motor levels, tethered cord releases, spine/scoliosis surgeries, hip orthopedic surgeries, and having supplemental insurance. Increased ambulatory ability was associated with lower motor levels, tibial torsion/related surgeries, ankle/foot surgeries, being female, and being non-Hispanic/Latinx. Decreased transfer ability was associated with being Hispanic/Latinx and having higher motor levels. Lower motor level and ankle/foot surgeries were associated with increased transfer ability. No significant associations were found in the non-MMC group., Conclusions: Motor level is an important predictor of ambulation and transfer ability in MMC. Surgeries distal to the knee were associated with higher levels of function; surgeries proximal to the knee were associated with lower functional levels., Competing Interests: Financial disclosure statements have been obtained, and no conflicts of interest have been reported by the authors or by any individuals in control of the content of this article., (Copyright © 2021 Wolters Kluwer Health, Inc. All rights reserved.)

Background: Current scales to measure motor impairment in adults with spina bifida (SB) are limited by their complexity, variable interpretation (i.e., subjectively defined impairment levels), or inclusion of muscles groups that are not always practical to test in a clinical setting., Objectives: A novel motor impairment tool for adults with SB was evaluated for content validity. The tool uses findings from the manual muscle testing of hip flexion and knee extension to categorize individuals into four motor impairment groups., Methods: Expert feedback was obtained on the tool, and content validity was measured using Lawshe's content validity ratio (CVR) with critical values recommended by Ayre and Scally. Data from phase 1 and phase 2 were used to revise the survey and calculate the CVR of the tool, respectively (benchmark: CVR ≥ 0.636)., Results: Of the 26 experts recruited, 17 received the survey and 15 participated in either phase 1 ( n = 6) or 2 ( n = 11). The CVR values for each impairment group were as follows: intact strength (0.95), thoracic strength (0.90), hip flexor dominant strength (0.89), and knee extensor dominant strength (0.82). The CVR of the tool overall was 0.89. Qualitative expert feedback revealed common barriers to manual muscle testing and suggestions for improving the tool. However, experts also noted the value in preserving the simplicity of the tool., Conclusion: The high content validity, coupled with expert feedback, suggests the tool may give clinicians and researchers a practical method of classifying an individual's extent of motor impairment., Competing Interests: Conflicts of Interest The authors report no conflicts of interest, (© 2022 American Spinal Injury Association.)

Objective: To determine the prevalence of poor mental and physical health among mothers of children with special health care needs (CSHCN) and to determine the association between maternal health and the child's number of special health care needs (SHCN) and severity of ability limitation., Methods: We used the combined 2016-2018 National Survey of Children's Health Dataset of 102,341 children ages 0-17 including 23,280 CSHCN. We used regression models to examine the associations of a child's number of SHCN and ability limitations with maternal health., Results: Twice as many mothers of CSHCN had poor mental and physical health compared to non-CSHCN (mental 10.3% vs. 4.0%, p < .001; physical 11.9% vs 5.0%, p < .001). In regression models, increased number of SHCN and severity of activity limitations were associated with significantly increased odds of poor maternal health., Conclusions for Practice: Mothers of CSHCN have worse health compared to mothers of non-CSHCN, especially those who experience social disadvantage and those with children with complex SHCN or severe ability limitations. Interventions to improve the health of these particularly vulnerable caregivers of CSHCN are warranted., (© 2022. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Purpose: The objective of this study was to determine how the COVID-19 pandemic impacted the work and compensation of pediatric physiatrists during the first year of the pandemic., Methods: Pediatric physiatrists were surveyed in the spring of 2021 about how the first year of the COVID-19 pandemic impacted their practices as a part of a larger survey examining pediatric rehabilitation medicine practices. The COVID-19 specific questions covered three topic areas: 1) personal experiences with COVID-19; 2) occupational workflow changes due to COVID-19, including telehealth; and 3) employment consequences of the COVID-19 pandemic., Results: Thirteen of 259 pediatric physiatrists reported having a COVID-19 infection, of whom none required hospitalization. Nearly all (96.5%) of pediatric physiatrists reported using telehealth during the pandemic compared to 14% prior to the pandemic. They reported numerous changes to their clinical operations, and 50% reported not having adequate personal protective equipment available for themselves or their staff all of the time. Fifteen pediatric physiatrists (5.9%) reported being furloughed, and three reported job loss during the first year of the pandemic., Conclusion: While only a small percentage of pediatric physiatrists contracted COVID-19 during the first year of the pandemic, nearly all experienced workflow changes.

Objectives: We describe the change in the percentage of children lacking continuous and adequate health insurance (underinsurance) from 2016 to 2019. We also examine the relationships between child health complexity and insurance type with underinsurance., Methods: Secondary analysis of US children in the National Survey of Children's Health combined 2016-2019 dataset who had continuous and adequate health insurance. We calculated differences in point estimates, with 95% confidence intervals (CIs), to describe changes in our outcomes over the study period. We used multivariable logistic regression adjusted for sociodemographic characteristics and examined relationships between child health complexity and insurance type with underinsurance., Results: From 2016 to 2019, the proportion of US children experiencing underinsurance rose from 30.6% to 34.0% (+3.4%; 95% CI, +1.9% to +4.9%), an additional 2.4 million children. This trend was driven by rising insurance inadequacy (24.8% to 27.9% [+3.1%; 95% CI, +1.7% to +4.5%]), which was mainly experienced as unreasonable out-of-pocket medical expenses. Although the estimate of children lacking continuous insurance coverage rose from 8.1% to 8.7% (+0.6%), it was not significant at the 95% CI (-0.5% to +1.7%). We observed significant growth in underinsurance among White and multiracial children, children living in households with income ≥200% of the federal poverty limit, and those with private health insurance. Increased child health complexity and private insurance were significantly associated with experiencing underinsurance (adjusted odds ratio, 1.9 and 3.5, respectively)., Conclusions: Underinsurance is increasing among US children because of rising inadequacy. Reforms to the child health insurance system are necessary to curb this problem., Competing Interests: FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose., (Copyright © 2022 by the American Academy of Pediatrics.)

Purpose: The purpose of this study was to evaluate associations of ethnicity and adaptive function with health-related quality of life (HRQOL) in youths with spina bifida myelomeningocele (SBM)., Methods: Participants included Hispanic (n = 75) and non-Hispanic White (n = 86) children and adolescents with SBM. Participants completed ratings of adaptive function and SBM-specific HRQOL. A series of linear multiple regression models was computed to investigate whether ethnicity moderates the relation between adaptive function and HRQOL., Results: Results showed that greater adaptive function was associated with higher HRQOL. While no relations were found between ethnicity and HRQOL, a significant interaction was observed between adaptive function and ethnicity over and above other terms. Although groups did not differ on HRQOL at lower levels of adaptive function, Hispanic participants rated higher HRQOL relative to non-Hispanic White participants at higher levels of adaptive function. Further analysis showed this was true of both nonmotor and motor aspects of adaptive function., Conclusion: Results suggested complex relations between ethnicity and adaptive function with HRQOL, highlighting the importance of optimizing adaptive functioning in youth with SBM.

Academic promotion is desired by many faculty practicing at academic medical institutions, but the criteria for promotion often appear opaque to many physician faculty. In nearly all cases, evidence of scholarship is required regardless of academic track. Academic advancement can be stymied by unclear expectations, lack of protected time to engage in scholarly projects, insufficient evidence of dissemination, and limited guidance, mentorship and sponsorship. In addition to being important for promotion, scholarship is an essential aspect of academic medicine because it helps inform and advance the science. Pursuing academic excellence is an important goal for pediatric rehabilitation medicine faculty members because it helps advance the care of children with disabilities and the field itself. Pediatric rehabilitation medicine faculty in the clinician educator or clinician leader tracks are encouraged to understand the criteria for advancement, seek out mentorship, scholarize their career ikigai and identify opportunities to demonstrate academic excellence.

Background: Training opportunities to pursue a career in pediatric rehabilitation medicine (PRM) have evolved over the last 40 years, with the most recent change being the development and accreditation of PRM fellowships and subspecialty certification in PRM. Currently the American Board of Physical Medicine & Rehabilitation (ABPMR) requires all candidates for PRM subspecialty certification to have completed a physical medicine and rehabilitation (PM&R) residency. The small number of certified PRM physicians has prompted debate within the field about permitting pediatricians to enter PRM fellowships without having to complete a PM&R residency., Objective: To assess the level of interest within the field of PRM in creating a pathway to PRM for pediatricians., Design: Survey of pediatric physiatrists in the United States in 2017., Setting: National., Participants: Pediatric physiatrists., Interventions: Not applicable., Main Outcome Measurements: Favorability toward pediatricians becoming certified in PRM., Results: Most respondents (62%) were in favor of pediatricians having the opportunity to pursue training in PRM, with an increase in support (70%) after being introduced to workforce issues in PRM. Training time for pediatricians was the largest concern identified by respondents who were not in favor (80%), with additional themes identified including dilution of the essence of the field and operationalization issues., Conclusions: With a small number of practicing pediatric physiatrists, the growing number of children with disabilities, and the limited access to our services, most pediatric physiatrists are in agreement that it is time to consider the opportunity to expand the PRM workforce by creating a fellowship pathway to subspecialty board certification in PRM after pediatric residency., (© 2021 American Academy of Physical Medicine and Rehabilitation.)

Background/objective: Pediatric neurocritical care survivorship is frequently accompanied by functional impairments. Lack of prognostic biomarkers is a barrier to early identification and management of impairment. We explored the association between blood biomarkers and functional impairment in children with acute acquired brain injury., Methods: This study is a secondary analysis of a randomized control trial evaluating early versus usual care rehabilitation in the pediatric intensive care unit (PICU). Forty-four children (17 [39%] female, median age 11 [interquartile range 6-13] years) with acute acquired brain injury admitted to the PICU were studied. A single center obtained serum samples on admission days 0, 1, 3, 5, and the day closest to hospital discharge. Biomarkers relevant to brain injury (neuron specific enolase [NSE], S100b), inflammation (interleukin [IL-6], C-reactive protein), and regeneration (brain-derived neurotrophic factor [BDNF], vascular endothelial growth factor [VEGF]) were collected. Biomarkers were analyzed using a Luminex® bioassay. Functional status scale (FSS) scores were abstracted from the medical record. New functional impairment was defined as a (worse) FSS score at hospital discharge compared to pre-PICU (baseline). Individual biomarker fluorescence index (FI) values for each sample collection day were correlated with new functional impairment using Spearman rank correlation coefficient (ρ). Trends in repeated measures of biomarker FI over time were explored graphically, and the association between repeated measures of biomarker FI and new functional impairment was analyzed using covariate adjusted linear mixed-effect models., Results: Functional impairment was inversely correlated with markers of regeneration and plasticity including BDNF at day 3 (ρ =  - 0.404, p = .015), day 5 (ρ =  - 0.549, p = 0.005) and hospital discharge (ρ =  - 0.420, p = 0.026) and VEGF at day 1 (ρ =  - 0.282, p = 0.008) and hospital discharge (ρ =  - 0.378, p = 0.047), such that lower levels of both markers at each time point were associated with greater impairment. Similarly, repeated measures of BDNF and VEGF were inversely correlated with new functional impairment (B =  - 0.001, p = 0.001 and B =  - 0.001, p = 0.003, respectively). NSE, a biomarker of acute brain injury, showed a positive correlation between day 0 levels and new functional impairment (ρ = 0.320, p = 0.044)., Conclusions: Blood-based biomarkers of regeneration and plasticity may hold prognostic utility for functional impairment among pediatric patients with neurocritical illness and warrant further investigation., (© 2021. Springer Science+Business Media, LLC, part of Springer Nature and Neurocritical Care Society.)

Competing Interests: POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.

Background: Children with medical complexity (CMC) represent a growing population with high emergency department (ED) utilization. How to reduce preventable ED visits is poorly understood., Objective: We sought to determine what components of ambulatory care programs focused on CMC were most effective in preventing ED visits., Data Sources: PubMed Plus, Cochrane Central Register of Controlled Trials, Web of Science, Scopus, and Cumulative Index to Nursing and Allied Health Literature databases through October 2019, and hand search of bibliographies., Study Eligibility Criteria: Two independent reviewers used a structured screening protocol to include English language articles summarizing studies that included CMC, emergency care, or ED utilization. Data on ED utilization were extracted., Results: Sixteen included studies described outpatient interventions to prevent ED utilization. Of these, studies that included 24/7 access to knowledgeable providers for acute care needs by phone (telehealth) or expedited or next-day appointments were the most consistently successful in reducing ED visits., Limitations: Risk of bias was mixed across studies. The evidence base is currently small and observational nature of interventions and their evaluations limit definitive, generalizable recommendations., Conclusions and Implications of Key Findings: Current research suggests that real-time access to knowledgeable providers and expedited appointments can prevent ED visits. Further study is needed to generalize these findings as well as investigate novel strategies such as telehealth to improve quality of care, decrease utilization, and provide cost-effective care for this vulnerable population., (Copyright © 2021 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved.)

Importance: The Management of Myelomeningocele Study (MOMS), a randomized clinical trial of prenatal vs standard postnatal repair for myelomeningocele, found that prenatal repair reduced hydrocephalus and hindbrain herniation and improved motor function in children aged 12 to 30 months. The Management of Myelomeningocele Study Follow-up (MOMS2) was conducted in children at ages 5 to 10 years. The primary (neurocognitive) outcome has already been reported., Objective: To determine whether MOMS2 participants who had prenatal repair have better physical functioning than those with postnatal repair., Design, Setting, and Participants: Participants from MOMS were recruited for participation in the follow-up study, MOMS2, conducted from April 9, 2012, to April 15, 2017. For this secondary analysis of the randomized clinical trial, trained examiners without knowledge of the treatment group evaluated the physical characteristics, self-care skills, neurologic function, and mobility of the children. Physical functioning outcomes were compared between the prenatal and postnatal repair groups. MOMS2 was conducted at the same 3 clinical sites as MOMS. Home visits were conducted for families who were unable to travel to one of the clinical sites. Of the 161 children with myelomeningocele aged 5 to 10 years old enrolled in MOMS2, 154 had a physical examination and were included in the analyses., Exposures: Prenatal repair of myelomeningocele., Main Outcomes and Measures: Prespecified secondary trial outcomes of self-care skills, functional mobility, walking skills, and motor level., Results: This analysis included 78 children with postnatal repair (mean [SD] age, 7.4 [2.1] years; 50 girls [64.1%]; 69 White children [88.5%]) and 76 with prenatal repair (mean [SD] age, 7.5 [1.2] years; 43 boys [56.6%]; 70 White children [92.1%]). Children in the prenatal repair group were more competent with self-care skills (mean [SD] percentage of maximum FRESNO Scale score, 90.8% [9.6%] vs 85.5% [17.6%]) and were commonly community ambulators per the Modified Hoffer Classification (51.3% prenatal vs 23.1% postnatal; adjusted relative risk [aRR] for sex, 1.70; 95% CI, 1.23-2.34). Children with prenatal repair also performed the 10-m walk test 1 second faster (difference in medians, 1.0; 95% CI, 0.3-1.7), had better gait quality (adjusted mean difference for home distances of 5 m, 1.71; 95% CI, 1.14-2.54), and could perform higher-level mobility skills (adjusted mean difference for motor total, 5.70; 95% CI, 1.97-11.18). Children in the prenatal repair group were less likely to have a motor function level worse than their anatomic lesion level (aRR, 0.44; 95% CI, 0.25-0.77)., Conclusions and Relevance: This secondary analysis of a randomized clinical trial found that the physical functioning benefits of prenatal repair for myelomeningocele reported at age 30 months persisted into school age. These findings indicate the benefit of prenatal repair of myelomeningocele for school-aged children., Trial Registration: ClinicalTrials.gov Identifier: NCT00060606.

Background: Children with neurologic impairment (NI) are at risk for developing co-occurring chronic conditions, increasing their medical complexity and morbidity. We assessed the prevalence and timing of onset for those conditions in children with NI., Methods: This longitudinal analysis included 6229 children born in 2009 and continuously enrolled in Medicaid through 2015 with a diagnosis of NI by age 3 in the IBM Watson Medicaid MarketScan Database. NI was defined with an existing diagnostic code set encompassing neurologic, genetic, and metabolic conditions that result in substantial functional impairments requiring subspecialty medical care. The prevalence and timing of co-occurring chronic conditions was assessed with the Agency for Healthcare Research and Quality Chronic Condition Indicator system. Mean cumulative function was used to measure age trends in multimorbidity., Results: The most common type of NI was static (56.3%), with cerebral palsy (10.0%) being the most common NI diagnosis. Respiratory (86.5%) and digestive (49.4%) organ systems were most frequently affected by co-occurring chronic conditions. By ages 2, 4, and 6 years, the mean (95% confidence interval [CI]) numbers of co-occurring chronic conditions were 3.7 (95% CI 3.7-3.8), 4.6 (95% CI 4.5-4.7), and 5.1 (95% CI 5.1-5.2). An increasing percentage of children had ≥9 co-occurring chronic conditions as they aged: 5.3% by 2 years, 10.0% by 4 years, and 12.8% by 6 years., Conclusions: Children with NI enrolled in Medicaid have substantial multimorbidity that develops early in life. Increased attention to the timing and types of multimorbidity in children with NI may help optimize their preventive care and case management health services., Competing Interests: POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose., (Copyright © 2021 by the American Academy of Pediatrics.)

Introduction: Depressive risk is higher for mothers of infants with chronic medical conditions. The present study examined maternal depressive risk and associations with parent and child outcomes among mothers of young children who were randomized to either prenatal or postnatal surgical closure for myelomeningocele., Methods: Using the Management of Myelomeningocele Study database, maternal depressive risk was examined at 3 time points as follows: prior to birth, 12 months, and 30 months post birth. Separate multivariate analyses examined associations among change in depressive risk (between baseline and 30 months), parenting stress, and child outcomes at 30 months., Results: Mean scores were in the minimal depressive risk range at all the time points. Post birth depressive risk did not differ by prenatal versus postnatal surgery. Mean change scores reflected a decrease in depressive risk during the first 30 months. Only 1.1-4.5% of mothers reported depressive risk in the moderate to severe range across time points. Increased depressive risk during the first 30 months was associated with increased parenting stress scores and slightly lower child cognitive scores at 30 months., Conclusion: Most mothers reported minimal depressive risk that decreased over time, regardless of whether their infant underwent prenatal or postnatal surgery. Only a small percentage of mothers endorsed moderate to severe depressive risk, but an increase in depressive risk over time was associated with higher parental stress and slightly lower child cognitive development., (© 2021 S. Karger AG, Basel.)

Competing Interests: POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.

Objectives: More children are surviving critical illness but are at risk of residual or new health conditions. An evidence-informed and stakeholder-recommended core outcome set is lacking for pediatric critical care outcomes. Our objective was to create a multinational, multistakeholder-recommended pediatric critical care core outcome set for inclusion in clinical and research programs., Design: A two-round modified Delphi electronic survey was conducted with 333 invited research, clinical, and family/advocate stakeholders. Stakeholders completing the first round were invited to participate in the second. Outcomes scoring greater than 69% "critical" and less than 15% "not important" advanced to round 2 with write-in outcomes considered. The Steering Committee held a virtual consensus conference to determine the final components., Setting: Multinational survey., Patients: Stakeholder participants from six continents representing clinicians, researchers, and family/advocates., Measurements and Main Results: Overall response rates were 75% and 82% for each round. Participants voted on seven Global Domains and 45 Specific Outcomes in round 1, and six Global Domains and 30 Specific Outcomes in round 2. Using overall (three stakeholder groups combined) results, consensus was defined as outcomes scoring greater than 90% "critical" and less than 15% "not important" and were included in the final PICU core outcome set: four Global Domains (Cognitive, Emotional, Physical, and Overall Health) and four Specific Outcomes (Child Health-Related Quality of Life, Pain, Survival, and Communication). Families (n = 21) suggested additional critically important outcomes that did not meet consensus, which were included in the PICU core outcome set-extended., Conclusions: The PICU core outcome set and PICU core outcome set-extended are multistakeholder-recommended resources for clinical and research programs that seek to improve outcomes for children with critical illness and their families.

Objective: To identify the specific features that contribute to the variability in baseline wheelchair transfer and the changes in transfer ability (gain or loss) over time for a large cohort of patients with spina bifida (SB) in the National Spina Bifida Patient Registry., Design: Longitudinal cohort study., Setting: A total of 35 United States outpatient SB clinic sites., Participants: Individuals (N=1687) with SB ages 5-73 (median, 13.33) years who were therapeutic ambulators or nonambulators., Intervention: Not applicable., Main Outcome Measure: Ability to transfer from a wheelchair to another level surface., Results: Bayesian Network Analysis was used to reduce the initial variable set to the following predictors: SB subphenotype, motor level, age, insurance, sex, race, ethnicity, surgical procedures, and number of visits. We used a multinomial logistic model with Wald Chi-square analysis of effects to examine the relationships between transfer ability and predictors. A total of 295 of 1687 eligible patients (17.56%) with myelomeningocele (MMC) and 6 of 58 eligible patients (10.32%) with non-MMC experienced changes in transfer ability during the period of the study. For those with MMC and non-MMC, the highest number of individuals exhibiting changes in motor level had changes from thoracic to high-lumbar, high-lumbar to thoracic, high-lumbar to midlumbar, and midlumbar to high-lumbar lesion levels. Results of the Bayesian Network Analysis revealed that motor level was the predominant factor associated with baseline transfer ability followed by age. The combination of SB sub phenotype, motor level, age, insurance status, number and type of surgical procedures, and time point accurately classified the loss, gain, or no change in transfer ability 82.7% of the time., Conclusions: Motor level was the predominant factor associated with baseline transfer ability, and the change in transfer ability was directly related to a corresponding change in motor level that might be explained by changes in muscle strength of the iliopsoas and quadriceps., (Published by Elsevier Inc.)