An Expanded Approach to the Ascertainment of Children and Youth With Special Health Care Needs.

OBJECTIVE: To describe the prevalence, characteristics, and health-related outcomes of children with diagnosed health conditions and functional difficulties who do not meet criteria for having a special health care need based on the traditional scoring of the Children with Special Health Care Needs (CSHCN) Screener. METHODS: Data come from the 2016 to 2021 National Survey of Children's Health (n = 225 443). Child characteristics and health-related outcomes were compared among 4 mutually exclusive groups defined by CSHCN Screener criteria and the presence of both conditions and difficulties. RESULTS: Among children who do not qualify as children and youth with special health care needs (CYSHCN) on the CSHCN Screener, 6.8% had ≥1 condition and ≥1 difficulty. These children were more likely than CYSHCN to be younger, female, Hispanic, uninsured, privately insured, living in a household with low educational attainment, have families with more children and a primary household language other than English. After adjustment, non-CYSHCN with ≥1 conditions and ≥1 difficulty were less likely than CYSHCN, but significantly more likely than other non-CYSHCN, to have ≥2 emergency department visits, have unmet health care needs, not meet flourishing criteria, live in families that experienced child health-related employment impacts and frustration accessing services. Including these children in the calculation of CYSHCN prevalence increases the national estimate from 19.1% to 24.6%. CONCLUSIONS: Approximately 4 million children have both a diagnosed health condition and functional difficulties but are not identified as CYSHCN. An expanded approach to identify CYSHCN may better align program and policy with population needs.

The Pittsburgh Impairment Testing Tool (PITT) for Spina Bifida Can Predict Ambulation and Transfer Ability in Adults with Spina Bifida.

OBJECTIVE: The aim of this study was to evaluate the predictive accuracy of the Pittsburgh Impairment Testing Tool (PITT). It was hypothesized that PITT would have a good overall accuracy (>80%) for predicting both ambulation and transfer ability and that overall accuracy of PITT 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: PITT 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. CONCLUSION: PITT 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.

Impact of disability-based discrimination in healthcare on parents of children with medical complexity.

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.

Impairment Types and Combinations Among Adolescents and Young Adults with Disabilities: Colorado 2014-2018.

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.

Specialist use among privately insured children with disabilities.

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.

Rehabilitation Outcomes in Children With Acute Flaccid Myelitis From 2014 to 2019: A Multicenter Retrospective Review.

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.

Perceived Disability-Based Discrimination in Health Care for Children With Medical Complexity.

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.

Pediatric Rehabilitation Medicine Physicians: Your Essential Medical Home Neighbors for Children with Disabilities.

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.

Hydrocephalus and school-age neurodevelopmental outcomes in the management of myelomeningocele prenatal surgery trial: a secondary analysis.

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.

The complete acute and post-acute care course of children affected by acute flaccid myelitis in Western Pennsylvania: A case series.

Acute flaccid myelitis (AFM) is a "polio-like" neurologic disorder of the spinal cord gray matter characterized by asymmetric, flaccid limb weakness of rapid onset following prodromal viral illness. It has affected the pediatric population of the United States since 2014, but there is a paucity of literature describing the post-acute comprehensive rehabilitation management that maximizes functional outcomes for patients. This case series attempts to mitigate this by describing the complete acute and post-acute care course of six children diagnosed with AFM in Western Pennsylvania. It is critical that pediatric rehabilitation medicine providers be knowledgeable about the complex medical and rehabilitation management for patients with AFM.

Functional outcomes of pediatric hemispherotomy: Impairment, activity, and medical service utilization.

OBJECTIVE: The purpose of this study was to describe the functional outcomes of hemispherotomy in a pediatric cohort, including impairments, activity limitations, utilization of therapies and medical specialist services, and subsequent surgical intervention. METHODS: We conducted a retrospective review of patients who underwent hemispherotomy at UPMC Children's Hospital of Pittsburgh from 2001 to 2021. Data on impairments, activity limitations in mobility, self-care, and communication, and use of re/habilitative therapies and medical specialist services were collected pre-operatively and at 1, 5, 10, and 15 years postoperatively. Seizure outcomes were reported via Engel classification at the longest follow-up interval and subsequent surgical procedures were documented through the latest follow-up interval. RESULTS: A total of 28 patients who underwent hemispherotomy were assessed prior to surgery, 26 at 1 year post-op, 13 at 5 years, 9 at 10 years, and 5 at 15 years. Seizure outcomes at the longest follow-up interval showed that 84.6% of patients were seizure-free. Assessment of impairments to body structure & function from baseline to 1-year post-op revealed increased impairment in 73% of patients, while most patients saw no change in impairment at 5 years (69%), 10 years (100%), and 15 years (100%) post-op compared to the previous time point. Muscle tone abnormalities (100%), hemiparesis (92%), and visual field deficits (85%) were the most frequently observed impairments in the first year following surgery. Most patients saw no change in developmental or cognitive-affective impairments at 1 (65%), 5 (85%), 10 (89%), and 15 years (80%) post-op compared to the previous time point. The only qualitative reports of decreased ability occurred in 2/26 patients whose medical records indicated decreased mobility at the 1-year mark. All further qualitative reports of ability in mobility, self-care, and communication domains indicated increases or no change in ability for all patients at each of the subsequent follow-up intervals. Exploration of the utilization of re/habilitative therapy services shows that 84% of patients received at least one therapy service at baseline, 100% at1 year, 92% at 5 years, 100% at 10 years, and 80% at 15 years post-op. Patients were followed, on average (m), by multiple medical specialist services at baseline (m = 2.58) as well as the 1- (m = 1.70), 5- (m = 2.15), 10- (m = 3.00) and 15-year (m = 3.40) follow-up intervals. Following hemispherotomy, 15 (53.6%) patients required an average of 2.21 additional surgeries. Most often required was orthopedic surgical intervention (n = 16 procedures), followed by shunt placement (n = 7) and revision (n = 14) targeting hydrocephalus. SIGNIFICANCE: This retrospective study demonstrates expected increases in impairments such as hemiparesis and visual field deficits (i.e., homonymous hemianopia) in the context of increased activity and favorable seizure outcomes for 28 pediatric patients who underwent hemispherotomy for drug-resistant epilepsy. Most patients required rehabilitative therapies prior to surgery and continued to require these services post-operatively. Reported baseline functional status, the persistence of impairments following surgery, and comorbidities among this cohort underscore the medical complexity of this patient population and the importance of multidisciplinary care both pre-and post-operatively.

Annual Days With a Health Care Encounter for Children and Youth Enrolled in Medicaid: A Multistate Analysis.

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.

First year impacts of the COVID-19 pandemic on pediatric physiatrists.

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.

Association of ethnicity and adaptive functioning with health-related quality of life in pediatric myelomeningocele.

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.