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.

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.

A Core Outcome Measurement Set for Pediatric Critical Care.

OBJECTIVES: To identify a PICU Core Outcome Measurement Set (PICU COMS), a set of measures that can be used to evaluate the PICU Core Outcome Set (PICU COS) domains in PICU patients and their families. DESIGN: A modified Delphi consensus process. SETTING: Four webinars attended by PICU physicians and nurses, pediatric surgeons, rehabilitation physicians, and scientists with expertise in PICU clinical care or research ( n = 35). Attendees were from eight countries and convened from the Pediatric Acute Lung Injury and Sepsis Investigators Pediatric Outcomes STudies after PICU Investigators and the Eunice Kennedy Shriver National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network PICU COS Investigators. SUBJECTS: Measures to assess outcome domains of the PICU COS are as follows: cognitive, emotional, overall (including health-related quality of life), physical, and family health. Measures evaluating social health were also considered. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Measures were classified as general or additional based on generalizability across PICU populations, feasibility, and relevance to specific COS domains. Measures with high consensus, defined as 80% agreement for inclusion, were selected for the PICU COMS. Among 140 candidate measures, 24 were delineated as general (broadly applicable) and, of these, 10 achieved consensus for inclusion in the COMS (7 patient-oriented and 3 family-oriented). Six of the seven patient measures were applicable to the broadest range of patients, diagnoses, and developmental abilities. All were validated in pediatric populations and have normative pediatric data. Twenty additional measures focusing on specific populations or in-depth evaluation of a COS subdomain also met consensus for inclusion as COMS additional measures. CONCLUSIONS: The PICU COMS delineates measures to evaluate domains in the PICU COS and facilitates comparability across future research studies to characterize PICU survivorship and enable interventional studies to target long-term outcomes after critical illness.

The Mental and Physical Health of Mothers of Children with Special Health Care Needs in the United States.

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.

Serum Biomarkers of Regeneration and Plasticity are Associated with Functional Outcome in Pediatric Neurocritical Illness: An Exploratory Study.

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.

Maternal Depressive Risk in Prenatal versus Postnatal Surgical Closure of Myelomeningocele: Associations with Parenting Stress and Child Outcomes.

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.

A Core Outcome Set for Pediatric Critical Care.

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.

Differences in Reporting Child Health Needs and Status and Developmental Concerns between Mothers and Fathers: Findings from the National Survey of Children's Health.

Nationally representative data of 140 000 children in 2-parent households showed that fathers were more likely than mothers to report that a child was in good health and less likely to report the presence of a specific health condition, special health care needs, or unmet health service needs.

A Tribute to Margaret Grace Stineman, MD.

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.

Gender-Based Salary Inequities Among Pediatric Rehabilitation Medicine Physicians in the United States.

OBJECTIVE: To assess whether gender inequities exist for pediatric physiatrists and, if affirmative, what factors account for this difference. DESIGN: Cohort study. SETTING: Online REDCap survey administered via e-mail. PARTICIPANTS: Pediatric physiatrists practicing in the United States in 2017. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Respondents reported on their gender, training, practice type and location, leadership positions, years in practice and years at their current location, salary, research, and clinical productivity. RESULTS: Of the 307 surveys sent, 235 individuals responded, yielding a response rate of 76.5%. Pediatric physiatrists who identified as women were more likely to work part-time but were demographically similar to their colleagues who identified as men. The odds of having no leadership role were higher for women (odds ratio=2.17; P=.02) than men. Pediatric physiatrists who identified as men made on average (in US dollars ± SD) 244,798±52,906 annually compared with those who identified as women 224,497±60,756. The average annual difference in full-time salary was $20,311 in favor of those who identified as men (95% confidence interval, $3135-$37,486). The set of predictors in the multivariable model explained about 40% of the total variability in annual full-time salary (R2=0.389; adjusted R2=0.339; F15,197=7.734; P<.001). Gender was not a significant predictor in the model, but model prediction of the salaries of pediatric physiatrists who identified as men was better than model prediction of the salaries of those who identified as women. CONCLUSIONS: Despite representing a majority of the field, pediatric physiatrists who identified as women were paid less than their counterparts who identified as men. The traditional predictors associated with the salaries of men were not enough to explain salary variation among those who identified as women, thereby providing evidence of the importance of intangible and unmeasured aspects of a women's career, such as bias and institutional culture.

Relationship Between Motor Level and Wheelchair Transfer Ability in Spina Bifida: A Study From the National Spina Bifida Patient Registry.

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.

Eliminating Categorical Exclusion Criteria in Crisis Standards of Care Frameworks.

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.

Effect of Prenatal Repair of Myelomeningocele on Urological Outcomes at School Age.

PURPOSE: We investigated longer term urological outcomes in patients enrolled in the Management of Myelomeningocele Study (MOMS). MATERIALS AND METHODS: 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. RESULTS: 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, p <0.001). Voiding status was significantly different between the groups (p <0.001) 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. CONCLUSIONS: 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.

Association of Home Respiratory Equipment and Supply Use with Health Care Resource Utilization in Children.

OBJECTIVE: To compare health care use and spending in children using vs not using respiratory medical equipment and supplies (RMES). STUDY DESIGN: Cohort study of 20 352 children age 1-18 years continuously enrolled in Medicaid in 2013 from 12 states in the Truven Medicaid MarketScan Database; 7060 children using RMES were propensity score matched with 13 292 without RMES. Home RMES use was identified with Healthcare Common Procedure Coding System and International Classification of Diseases codes. RMES use was regressed on annual per-member-per-year Medicaid payments, adjusting for demographic and clinical characteristics, including underlying respiratory and other complex chronic conditions. RESULTS: Of children requiring RMES, 47% used oxygen, 28% suction, 22% noninvasive positive-pressure ventilation, 17% tracheostomy, 8% ventilator, 5% mechanical in-exsufflator, and 4% high-frequency chest wall oscillator. Most children (93%) using RMES had a chronic condition; 26% had ≥6. The median per-member-per-year payments in matched children with vs without RMES were $24 359 vs $13 949 (P < .001). In adjusted analyses, payment increased significantly (P < .001 for all) with mechanical in-exsufflator (+$2657), tracheostomy (+$6447), suction (+$7341), chest wall oscillator (+$8925), and ventilator (+$20 530). Those increased payments were greater than the increase associated with a coded respiratory chronic condition (+$2709). Hospital and home health care were responsible for the greatest differences in payment (+$3799 and +$3320, respectively) between children with and without RMES. CONCLUSION: The use of RMES is associated with high health care spending, especially with hospital and home health care. Population health initiatives in children may benefit from consideration of RMES in comprehensive risk assessment for health care spending.

PICU-Based Rehabilitation and Outcomes Assessment: A Survey of Pediatric Critical Care Physicians.

OBJECTIVES: Characterize current practices for PICU-based rehabilitation, and physician perceptions and attitudes, barriers, resources, and outcome assessment in contemporary PICU settings. DESIGN: International, self-administered, quantitative, cross-sectional survey. SETTING: Online survey distributed from March 2017 to April 2017. PATIENTS OR SUBJECTS: Pediatric critical care physicians who subscribed to email distribution lists of the Pediatric Acute Lung Injury and Sepsis Investigators, the Pediatric Neurocritical Care Research Group, or the Prevalence of Acute Critical Neurological Disease in Children: A Global Epidemiological Assessment study group, and visitors to the World Federation of Pediatric Intensive and Critical Care Societies website. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Of the 170 subjects who began the survey, 148 completed it. Of those who completed the optional respondent information, most reported working in an academic medical setting and were located in the United States. The main findings were 1) a large majority of PICU physicians reported working in institutions with no guidelines for PICU-based rehabilitation, but expressed interest in developing and implementing such guidelines; 2) despite this lack of guidelines, an overwhelming majority of respondents reported that their current practices would involve consultation of multiple rehabilitation services for each case example provided; 3) PICU physicians believed that additional research evidence is needed to determine efficacy and optimal implementation of PICU-based rehabilitation; 4) PICU physicians reported significant barriers to implementation of PICU-based rehabilitation across centers; and 5) low routine assessment of long-term functional outcomes of PICU patients, although some centers have developed multidisciplinary follow-up programs. CONCLUSIONS: Physicians lack PICU-based rehabilitation guidelines despite great interest and current practices involving a high degree of PICU-based rehabilitation consultation. Data are needed to identify best practices and necessary resources in the delivery of ICU-based multidisciplinary rehabilitation and long-term functional outcomes assessment to optimize recovery of children and families affected by critical illness.

Early Protocolized Versus Usual Care Rehabilitation for Pediatric Neurocritical Care Patients: A Randomized Controlled Trial.

OBJECTIVE: 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. DESIGN: Randomized controlled trial. SETTING: Three tertiary care PICUs in the United States. PATIENTS: 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. INTERVENTIONS: 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). MEASUREMENTS AND MAIN RESULTS: 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 p < 0.001). 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. CONCLUSIONS: 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.

Invited Commentary on "The Report to Congress on the Management of Traumatic Brain Injury in Children".

The Centers for Disease Control and Prevention (CDC) published "The Report to Congress on the Management of Traumatic Brain Injury in Children" in the spring of 2018. The report is a call to action for professionals providing care for children with traumatic brain injury in the health, social, and educational sectors and for researchers, administrators, and agencies to develop strategies to improve outcomes. For pediatric rehabilitation providers there are clear opportunities to improve service delivery for individual patients and for the population of children after traumatic brain injury more generally. Notably there is a workforce shortage, and fragmentation exists among the various systems that serve children with traumatic brain injuries and their families.