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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.

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.

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.

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.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.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.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.

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.

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.

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. 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. 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). Blood-based biomarkers of regeneration and plasticity may hold prognostic utility for functional impairment among pediatric patients with neurocritical illness and warrant further investigation.

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.

Sexual development is not only comprised of the changes to a person’s body during puberty; it is a part of social development and should be considered in the context of basic and routine human desires for connectedness and intimacy, beliefs, values and aspirations. As is true for everyone, it is important that individuals with spina bifida have opportunities to acquire developmentally appropriate, relevant and accurate sexual health knowledge. Those with spina bifida need to be able to negotiate sexual desire, intimacy and sexual expression. They also need education about their sexual health and how to limit the negative outcomes of sexual activity related to sexually transmitted infections, unplanned pregnancy or sexual coercion, violence, abuse or exploitation. This article discusses the Spina Bifida Sexual Health and Education Healthcare Guidelines from the 2018 Spina Bifida Association’s Fourth Edition of the Guidelines for the Care of People with Spina Bifida using the World Health Organization’s framing of sexual health and reviews the literature on sexual health and education for individuals with spina bifida.

Quality of Life (QOL) and Health-Related Quality of Life (HRQOL) are important concepts across the life span for those with spina bifida (SB). This article discusses the SB Quality of Life Healthcare Guidelines from the 2018 Spina Bifida Association’s Fourth Edition of the Guidelines for the Care of People with Spina Bifida. The focus of these QOL Guidelines was to summarize the evidence and expert opinions on how to mitigate factors that negatively impact QOL/HRQOL or enhance the factors positively related to QOL/HRQOL, the measurement of QOL/HRQOL and the gaps that need to be addressed in future research.

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.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.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).Development and testing of interventions specifically targeting the well-being of CSHCN-SD and CMC families and caregivers is needed.

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.

Children with disabilities are disproportionately impacted by COVID-19 and the containment response. Their caregivers must now adapt to increased stressors such as lack of access to needed therapies, medical supplies, and nursing care. Prior to COVID-19 these families were already marginalized, and this has only worsened during the pandemic. As a vulnerable population, children with disabilities have not been the focus of much discussion during the pandemic, likely because the disease disproportionately impacts older individuals. Nonetheless, children with disabilities should be a focus of evaluation and intervention to mitigate the negative consequences of COVID-19 and the resulting containment strategies. Their needs should be included in future crisis planning, as well. In order to raise awareness of pediatric rehabilitation professionals, health care administrators, policy makers, and advocates, this manuscript provides a discussion of the following topics: the immediate and ongoing impacts on children with disabilities and their families, the ethical concerns and implications of triage protocols for scarce resources that consider disability in their scoring systems, and optimizing medical care and educational needs in the time of COVID.

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.

During public health crises including the COVID-19 pandemic, resource scarcity and contagion risks may require health systems to shift-to some degree-from a usual clinical ethic, focused on the well-being of individual patients, to a public health ethic, focused on population health. Many triage policies exist that fall under the legal protections afforded by "crisis standards of care," but they have key differences. We critically appraise one of the most fundamental differences among policies, namely the use of criteria to categorically exclude certain patients from eligibility for otherwise standard medical services. We examine these categorical exclusion criteria from ethical, legal, disability, and implementation perspectives. Focusing our analysis on the most common type of exclusion criteria, which are disease-specific, we conclude that optimal policies for critical care resource allocation and the use of cardiopulmonary resuscitation (CPR) should not use categorical exclusions. We argue that the avoidance of categorical exclusions is often practically feasible, consistent with public health norms, and mitigates discrimination against persons with disabilities.

OBJECTIVE Intimate partner violence (IPV) prevention among adolescent patients with disability is needed, yet rarely discussed in the clinical setting. This study evaluated the feasibility of implementing a brief educational training based on an evidence-based IPV intervention in a pediatric spina bifida clinic. Frequency of IPV discussion was assessed through evaluation of patient feedback and provider surveys. METHODS Adolescent patients with spina bifida aged 12-21 completed after visit surveys before (N= 13) and after the provider training (N= 21). Primary outcomes included frequency of provider discussion about IPV and receipt of patient safety cards. Chi-square tests compared patient feedback prior to and two months following the education session. Provider knowledge and attitude changes were assessed with pre-post surveys. RESULTS More patients discussed IPV with providers following the education session compared to baseline (p= 0.03). Provider feedback, both immediately and at two months after the education session showed increased awareness of IPV, comfort with assessment, disclosure, and referral to resources. CONCLUSIONS The educational intervention increased provider comfort with addressing IPV within a specialty clinical setting. The frequency of IPV communication significantly increased as compared to baseline, patients reported the discussions were beneficial, and providers reported greater comfort discussing IPV and referring patients to resources.

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.

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.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.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.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.

The authors describe the disparities and increased risk of traumatic spinal cord injury Black Americans face as a result of violence. The manuscript should serve as a realization of these inequities and as a call to action to improve the equity of rehabilitation services in this population to improve outcomes.

* Abbreviations: CMC — : children with medical complexity NI — : neurologic impairment NSQIP — : National Surgical Quality Improvement Program The growing population of children with medical complexity (CMC), especially those with neurologic impairment (NI), is increasingly the focus of researchers, clinician leaders, and policy makers.1 In this issue of Pediatrics , Mpody et al2 add to this emerging literature base by clearly demonstrating that NI, a common health condition among CMC, is strongly associated with postoperative pneumonia. Using data from the National Surgical Quality Improvement Program (NSQIP), the authors confirm what most pediatricians learn during training: compared with children without underlying neurologic comorbidities, children with NI are at significantly higher risk for developing pneumonia and experiencing prolonged hospitalizations after a surgical procedure.3 This study raises important questions, some of which are noted by the authors. For example, which specific clinical characteristics put children with cerebral palsy or neuromuscular disorders at increased risk for postoperative pneumonia, and which ones are protective? Among children with NI, which surgical procedures are associated with the highest risk of postoperative complications? How do other postoperative outcome metrics (eg, 30-day rehospitalization rate) differ by NI status? Answering these questions will improve … Address correspondence to Justin Yu, MD, MS, University of Pittsburgh Medical Center Children’s Hospital of Pittsburgh, Faculty Pavilion, Suite 3110, 4401 Penn Ave, Pittsburgh, PA 15224. E-mail: yuja{at}upmc.edu

The field of physical medicine and rehabilitation mourns the death of Margaret Grace Stineman, MD. She was an incredibly productive researcher who helped to shape the delivery of rehabilitation care. She was a trusted colleague, mentor, and friend to many. Her outstanding accomplishments were acknowledged by her numerous awards and her election into honorary societies. Dr Stineman spent her career at the University of Pennsylvania and retired as Professor Emeritus in 2014. She is survived by her mother and innumerable colleagues and friends who were touched by her passion, intelligence, and dedication.

We investigated longer term urological outcomes in patients enrolled in the Management of Myelomeningocele Study (MOMS).Women who participated in the original trial were asked for consent for followup for their child at age 6 years or older in a single comprehensive study visit to a MOMS center. Participating children underwent urological and radiologic procedures to provide objective evidence of current bladder functioning. Primary urological outcome was defined as any among need for clean intermittent catheterization, vesicostomy, urethral dilatation or augmentation cystoplasty.A total of 156 children were evaluated, with a mean age of 7.4 years. Overall 62% vs 87% in the prenatal and postnatal surgery groups, respectively, were placed on clean intermittent catheterization (RR 0.71, 95% CI 0.58-0.86, p0.001). Voiding status was significantly different between the groups (p0.001) as 24% in the prenatal group vs 4% in the postnatal group (RR 5.8, 95% CI 1.8-18.7) were reported to be voiding volitionally. Augmentation cystoplasty, vesicostomy and urethral dilation did not differ between the 2 groups. Aside from a larger post-void residual urodynamic catheterization volume, there were no other statistical differences in videourodynamic data or findings on renal/bladder ultrasound.Prenatal closure of myelomeningocele resulted in less reported clean intermittent catheterization at school age and the mechanism for this is unclear. Although most children are in diapers or on clean intermittent catheterization, parental reports showed children who underwent prenatal closure may be more likely to void volitionally than the postnatal group. Despite these findings, urological outcomes alone should not be the sole impetus to perform in utero closure in children with spina bifida.

s: Few feasibility, safety, and efficacy data exist regarding ICU-based rehabilitative services for children. We hypothesized that early protocolized assessment and therapy would be feasible and safe versus usual care in pediatric neurocritical care patients.Randomized controlled trial.Three tertiary care PICUs in the United States.Fifty-eight children between the ages of 3-17 years with new traumatic or nontraumatic brain insult and expected ICU admission greater than 48 hours.Early protocolized (consultation of physical therapy, occupational therapy, and speech and language therapy within 72 hr ICU admission, n = 26) or usual care (consultation per treating team, n = 32).Primary outcomes were consultation timing, treatment type, and frequency of deferrals and safety events. Secondary outcomes included patient and family functional and quality of life outcomes at 6 months. Comparing early protocolized (n = 26) and usual care groups (n = 32), physical therapy was consulted during the hospital admission in 26 of 26 versus 28 of 32 subjects (p = 0.062) on day 2.4 ± 0.8 versus 7.7 ± 4.8 (p = 0.001); occupational therapy in 26 of 26 versus 23 of 32 (p = 0.003), on day 2.3 ± 0.6 versus 6.9 ± 4.8 (p = 0.001); and speech and language therapy in 26 of 26 versus 17 of 32 (p = 0.011) on day 2.3 ± 0.7 versus 13.0 ± 10.8 (p = 0.026). More children in the early protocolized group had consults and treatments occur in the ICU versus ward for all three services (all p0.001). Eleven sessions were discontinued early: nine during physical therapy and two during occupational therapy, none impacting patient outcome. There were no group differences in functional or quality of life outcomes.A protocol for early personalized rehabilitation by physical therapy, occupational therapy, and speech and language therapy in pediatric neurocritical care patients could be safely implemented and led to more ICU-based treatment sessions, accelerating the temporal profile and changing composition of interventions versus usual care, but not altering the total dose of rehabilitation.

Children with medical complexity (CMC) are a medically fragile pediatric population that experience severe chronic illnesses resulting in significant health care needs, functional limitations, and health care utilization, and are at the highest risk for morbidity and mortality among all children. Furthermore, families and parents of CMC experience significant caregiver hardships and diminished quality of life. The field of pediatric palliative care has grown in recent years, in part to address the physical and psychosocial issues inherent to the care of these chronically ill children. However, as the prevalence and long-term survival of CMC increases with medical advancements, the demand for pediatric palliative care will likely exceed the capacity of current and future pediatric palliative care specialists. Therefore, alternative strategies to ensure access to essential aspects of palliative care must be considered. This article focuses on why and how high-quality palliative care should be integrated into the patient- and family-centered medical home, the ideal care delivery model for CMC and their families. We first discuss how palliative care principles naturally align with and complement the goals of the CMC medical home. Next, we detail what actions pediatric palliative care specialists can take to best support the CMC medical home as "medical neighbors." Lastly, we describe the fundamental aspects of pediatric palliative care that all clinicians caring for CMC should be able to provide, referred to as "primary pediatric palliative care." (PsycINFO Database Record (c) 2019 APA, all rights reserved).

OBJECTIVE The aim of the study was to identify which neurologic impairment scales correlate with ambulation status in adults with spina bifida. DESIGN A retrospective chart review was performed on patients seen at the University of Pittsburgh Medical Center Adult Spina Bifida Clinic. Findings were graded using several neurologic impairment scales: two versions of the National Spina Bifida Patient Registry classification, the International Standards for Neurological Classification of Spinal Cord Injury motor level, and the Broughton Neurologic Impairment Scale. Ambulation ability was ranked using the Hoffer classification system. RESULTS Data collected from 409 patient records showed significant correlations between Hoffer ambulation status and all neurologic impairment scales evaluated. The strongest correlation was noted with the Broughton classification (rs = -0.771, P < 0.001). High correlations were also noted with both versions of the National Spina Bifida Patient Registry: strength 3/5 or greater (rs = -0.763, P < 0.001), and strength 1/5 or greater (rs = -0.716, P < 0.001). For the International Standards for Neurological Classification of Spinal Cord Injury motor level, only a moderate correlation was observed (rs = -0.565, P < 0.001). CONCLUSIONS Multiple grading scales can be used to measure motor function in adult spina bifida patients. Although the Broughton classification seems to be the most highly correlated with ambulation status, the less complex National Spina Bifida Patient Registry scale is also highly correlated and may be easier to administer in busy clinic settings. TO CLAIM CME CREDITS Complete the self-assessment activity and evaluation online at http://www.physiatry.org/JournalCME CME OBJECTIVES: Upon completion of this article, the reader should be able to: (1) Explain the clinical significance of identifying ambulation status and maximizing ambulation potential in adults with spina bifida; (2) Describe each of the neurologic grading scales examined in this study, identifying potential shortcomings in applying them to the adult spina bifida population; and (3) Administer the National Spina Bifida Patient Registry (NSBPR) impairment scale motor assessment in a standard adult spina bifida outpatient clinic visit. LEVEL Advanced ACCREDITATION: The Association of Academic Physiatrists is accredited by the Accreditation Council for Continuing Medical Education to provide continuing medical education for physicians.The Association of Academic Physiatrists designates this Journal-based CME activity for a maximum of 1.0 AMA PRA Category 1 Credit(s)™. Physicians should only claim credit commensurate with the extent of their participation in the activity.

Background Prenatal surgery for myelomeningocele (MMC) has been demonstrated to have benefits over postnatal surgery. Nevertheless, prenatal surgery requires a significant emotional, physical, and financial commitment from the entire family. Methods Mixed methods study of parents' perceptions regarding provider communication, treatment choices, and the family impact of having a child with MMC. Results Parents of children with MMC (n= 109) completed questionnaires. Parents were well informed and reported gathering information about prenatal surgery from a wide range of sources. After a fetal diagnosis of MMC, most learned about their options from their obstetrician, although one-third were not told about the option of prenatal surgery. About one-fourth of these parents felt pressure to undergo one particular option. Half of parents said that having a child with MMC has had a positive impact on them and their family, while the other half indicated that having a child with MMC has had both positive and negative impacts. The most commonly noted positive impacts were changes in parental attitudes, as well as having new opportunities and relationships. The most frequently reported negative impacts concerned relational and financial strain. The vast majority of parents indicated that they would still undergo prenatal surgery if they could travel back in time with their present knowledge. Conclusions A better understanding of the parental experiences and perspectives following prenatal surgery will play an important role in providing overall support for parents and family members.

OBJECTIVES: To develop a method of identifying children with medical complexity (CMC) from the National Survey of Children’s Health (NSCH) 2016–2017 combined data set, to compare this approach to existing CMC identification strategies, and to describe sociodemographic characteristics of our CMC sample. METHODS: Using survey items pertinent to the medical complexity domains in the style by Cohen et al (chronic health conditions, health service needs, health care use, and functional limitations), we created a schema to categorize children as CMC by applying a 95th percentile cutoff for survey item positivity. We applied existing CMC identification techniques to the NSCH. We used 2-proportion z tests to compare the classification output of our CMC identification method to those of existing approaches. We used χ2 analyses to examine relationships between child and family characteristics, comparing CMC with children with special health care needs (CSHCN) and children with no special health care needs. RESULTS: Among the 71 811 children in the sample, 1.5% were classified as CMC by our method, representing almost 1.2 million children (weighted) in the United States in 2016–2017. CSHCN and children with no special health care needs represented 17.2% (weighted n = 12.6 million) and 81.2% (weighted n = 59.6 million) of the sample, respectively. Our approach classified a significantly smaller number of CSHCN as CMC than existing CMC identification methods, which classified 3.9% to 13.2% of the 2016–2017 NSCH sample as more complex (P < .001). CMC status was significantly associated with male sex, minority race or ethnicity, and experiencing socioeconomic adversity (all P < .001). CONCLUSIONS: This method enables standardized identification of CMC from NSCH data sets, thus allowing for an examination of CMC health outcomes, pertinent to pediatric hospitalist medicine, contained in the survey.

OBJECTIVES: To describe the access of children with medical complexity (CMC) to well-functioning health care systems. To examine the relationships between medical complexity status and this outcome and its component indicators. PATIENTS AND METHODS: Secondary analysis of children in the National Survey of Children’s Health combined 2016–2017 data set who received care in well-functioning health systems. Secondary outcomes included this measure’s component indicators. The χ2 analyses were used to examine associations between child and family characteristics and the primary outcome. Adjusted multivariable logistic regression was used to examine relationships between medical complexity status and primary and secondary outcomes. Using these regression models, we examined the interaction between medical complexity status and household income. RESULTS: CMC accounted for 1.6% of the weighted sample (n = 1.2 million children). Few CMC (7.6%) received care in a well-functioning health care system. CMC were significantly less likely than children with special health care needs (CSHCN) (odds ratio, 0.3) of meeting criteria for this primary outcome. Attainment rates for secondary outcomes (families feeling like partners in care; receives care within a medical home; received needed health care) were significantly lower among CMC than CSHCN. Family income was significantly associated with likelihood of meeting criteria for primary and secondary outcomes; however, the relationships between medical complexity status and our outcomes did not differ by income level. CONCLUSIONS: CMC are less likely than other CSHCN to report receiving care in well-functioning health care systems at all income levels. Further efforts are necessary to better adapt current health care systems to meet the unique needs of CMC.

Optimal healthcare quality can be defined as the provision of safe and effective care that improves outcomes, optimizes health, results in higher patient satisfaction, and furthers quality of life. The focus of healthcare worldwide has shifted from the fee-for-services model in which healthcare services rendered were rewarded in terms of volume to an emphasis on the best possible quality, safety, and outcomes as the top priorities. Thus the evaluation, measurement, and reporting of quality and outcomes have become the business of not only every healthcare institution and hospital but also of every individual healthcare provider. Physical medicine and rehabilitation practitioners have become increasingly aware of the importance of measuring healthcare quality and outcomes. This comes from increased scrutiny of healthcare quality, the cost of care, and quality reporting requirements from third-party payers, insurance companies, and reimbursing agencies. However, practicing physiatrists and professional member societies have also been realizing the importance of data on healthcare quality and outcomes. This has driven advancements in and availability of data repositories such as clinical registries. This chapter discusses healthcare quality, evidence-based medicine, clinical practice guidelines, outcome measures, performance measures, practice improvement, patient safety, and accreditation as it applies to healthcare in general and the practice of physical medicine and rehabilitation in particular.

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.

Over 80% of the children in the world have had their education impacted by COVID-19. For children with disabilities who receive special education services, access to in-person education and other resources at school is particularly important. The American Academy of Pediatrics advocates for students to attend school in person, without specifics for how children with disabilities can safely return to school. To appropriately plan and accommodate children with disabilities we must prioritize safety, allow for adherence to the Individuals with Disabilities Education Act, and preserve essential school staff. The less cumbersome default of confining students with disabilities to home is not acceptable. We provide an outline describing why Individual Education Plans and 504 plans are important, how they are related to the COVID-19 pandemic, and recommendations for measures to help with safe return to school for children with disabilities.

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.

Objective Pediatric complex care centers are an increasingly common approach to address the needs of children with medical complexity (CMC). We sought to better understand CMC caregivers’ perceptions of what constitutes high-quality care at a complex care center. Methods We conducted a cross-sectional qualitative study of family caregivers of CMC receiving care at a pediatric complex care center situated within a tertiary-care children's hospital. In-depth, semistructured interviews focused on caregivers’ general experiences at the clinic, positive and negative experiences related to core components of the pediatric medical home, and recommendations for improvements. We thematically analyzed transcripts through a mixed inductive and deductive approach, using constant comparative methodology, with the pediatric medical home model as an organizing framework. Results We conducted interviews with 20 participants (18 [90%] biological parents; 19 [95%] female; mean age 39 years) in outpatient settings. Caregivers described 2 major themes: 1) the value of having a clinician “quarterback” who is in-charge of their child's care and caregivers’ go-to for questions and concerns, and 2) wanting clinicians who are personally invested in and willing to “go above and beyond” for their child. Participants discussed how and which components of the medical home model enable CMC clinicians to meet these needs. Conclusions Family caregivers of CMC want clinicians who take responsibility for managing their child's overall care and demonstrate personal commitment to ensuring their child's well-being. Multiple aspects of the medical home framework, rather than care coordination alone, help meet caregivers’ perceptions of high-quality complex care.

[Figure: see text] CONTEXT: Women with disabilities are at elevated risk for pregnancy, delivery, and postpartum complications. However, there has not been a synthesis of literature on the neonatal and infant health outcomes of their offspring. OBJECTIVE: We examined the association between maternal disability and risk for adverse neonatal and infant health outcomes. DATA SOURCES: Cumulative Index to Nursing and Allied Health Literature, Embase, Medline, and PsycINFO were searched from database inception to January 2020. STUDY SELECTION: Studies were included if they reported original data on the association between maternal physical, sensory, or intellectual and/or developmental disabilities and neonatal or infant health outcomes; had a referent group of women with no disabilities; were peer-reviewed journal articles or theses; and were written in English. DATA EXTRACTION: We used standardized instruments to extract data and assess study quality. DerSimonian and Laird random effects models were used for pooled analyses. RESULTS: Thirty-one studies, representing 20 distinct cohorts, met our inclusion criteria. Meta-analyses revealed that newborns of women with physical, sensory, and intellectual and/or developmental disabilities were at elevated risk for low birth weight and preterm birth, with smaller numbers of studies revealing elevated risk for other adverse neonatal and infant outcomes. LIMITATIONS: Most studies had moderate (n = 9) or weak quality (n = 17), with lack of control for confounding a common limitation. CONCLUSIONS: In future work, researchers should explore the roles of tailored preconception and perinatal care, along with family-centered pediatric care particularly in the newborn period, in mitigating adverse outcomes among offspring of women with disabilities.

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.