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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: Evidence is limited regarding clinical factors associated with ambulation status over the lifespan of individuals with myelomeningocele. We used longitudinal data from the National Spina Bifida Patient Registry to model population-level variation in ambulation over time and hypothesized that effects of clinical factors associated with ambulation would vary by age and motor level., Design: A population-averaged generalized estimating equation was used to estimate the probability of independent ambulation. Model predictors included time (age), race, ethnicity, sex, insurance, and interactions between time, motor level, and the number of orthopedic, noncerebral shunt neurosurgeries, and cerebral shunt neurosurgeries., Results: The study cohort included 5371 participants with myelomeningocele. A change from sacral to low-lumbar motor level initially reduced the odds of independent ambulation (OR = 0.24, 95% CI = 0.15-0.38) but became insignificant with increasing age. Surgery count was associated with decreased odds of independent ambulation (orthopedic: OR = 0.65, 95% CI = 0.50-0.85; noncerebral shunt neurosurgery: OR = 0.65, 95% CI = 0.51-0.84; cerebral shunt: OR = 0.90, 95% CI = 0.83-0.98), with increasing effects seen at lower motor levels., Conclusions: Our findings suggest that effects of several commonly accepted predictors of ambulation status vary with time. As the myelomeningocele population ages, it becomes increasingly important that study design account for this time-varying nature of clinical reality., 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) Describe general trends in ambulation status by age in the myelomeningocele population; (2) Recognize the nuances of cause and effect underlying the relationship between surgical intervention and ambulation status; (3) Explain why variation of clinical effect over time within myelomeningocele population matters., 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.

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., (Copyright © 2019 Elsevier Inc. All rights reserved.)

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 (R 2 =0.389; adjusted R 2 =0.339; F 15,197 =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., (Copyright © 2019 American Congress of Rehabilitation Medicine. Published by Elsevier Inc. All rights reserved.)

Objective: The Supplemental Security Income (SSI) program for children with disabilities has come under recent public and political scrutiny. We sought to determine if children with special health care needs (CSHCN) on Medicaid/SCHIP who receive SSI for disability were more severely impacted by their health conditions compared to other CSHCN on Medicaid/SCHIP by comparing their health service utilization, markers of quality health care, and family impacts., Methods: Using the 2009/2010 National Survey of CSHCN, we divided the population of CSHCN on Medicaid/SCHIP into 2 groups: CSHCN on SSI for disability and other CSHCN. We compared these 2 groups on measures of health condition severity, health service need and unmet need, health system quality measures, and family impact., Results: CSHCN on SSI had significantly higher adjusted odds of being affected by their health conditions, aOR = 4.33 (3.33-5.9) and having 2 or more functional difficulties, AOR = 3.38 (2.83-4.03). CSHCN on SSI had significantly higher health care needs but not higher unmet needs. The families of CSHCN on SSI experienced more work loss, aOR = 3.01 (2.52-3.59) and more financial problems, aOR = 1.68 (1.38-2.04)., Conclusion: This study indicates higher severity and extensive health service needs among CSHCN receiving SSI, compared to other low income children. CSHCN receiving SSI experience substantially more difficulty related to their health conditions and their conditions have considerably more impact on the daily lives of their parents., (Copyright © 2019 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved.)

Background and Objectives: The Management of Myelomeningocele Study (MOMS), a randomized trial of prenatal versus postnatal repair for myelomeningocele, found that prenatal surgery resulted in reduced hindbrain herniation and need for shunt diversion at 12 months of age and better motor function at 30 months. In this study, we compared adaptive behavior and other outcomes at school age (5.9-10.3 years) between prenatal versus postnatal surgery groups., Methods: Follow-up cohort study of 161 children enrolled in MOMS. Assessments included neuropsychological and physical evaluations. Children were evaluated at a MOMS center or at a home visit by trained blinded examiners., Results: The Vineland composite score was not different between surgery groups (89.0 ± 9.6 in the prenatal group versus 87.5 ± 12.0 in the postnatal group; P = .35). Children in the prenatal group walked without orthotics or assistive devices more often (29% vs 11%; P = .06), had higher mean percentage scores on the Functional Rehabilitation Evaluation of Sensori-Neurologic Outcomes (92 ± 9 vs 85 ± 18; P < .001), lower rates of hindbrain herniation (60% vs 87%; P < .001), had fewer shunts placed for hydrocephalus (49% vs 85%; P < .001) and, among those with shunts, fewer shunt revisions (47% vs 70%; P = .02) than those in the postnatal group. Parents of children repaired prenatally reported higher mean quality of life z scores (0.15 ± 0.67 vs 0.11 ± 0.73; P = .008) and lower mean family impact scores (32.5 ± 7.8 vs 37.0 ± 8.9; P = .002)., Conclusions: There was no significant difference between surgery groups in overall adaptive behavior. Long-term benefits of prenatal surgery included improved mobility and independent functioning and fewer surgeries for shunt placement and revision, with no strong evidence of improved cognitive functioning., Competing Interests: POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose., (Copyright © 2020 by the American Academy of Pediatrics.)

Background: Childhood disability is on the rise and there is a national shortage of pediatric physiatrists in the United States. The 2009 Pediatric Rehabilitation Medicine Practice Survey identified concerns regarding inadequate geographic dispersion of providers, salary inequities, and limited academic competitiveness and external funding for research., Objective: To describe the current state of the field of pediatric rehabilitation medicine., Design: Survey of pediatric physiatrists in the United States in 2014 and 2017., Setting: National., Participants: Pediatric physiatrists INTERVENTIONS: Not applicable., Main Outcome Measurements: Characteristics; clinical activities, responsibilities, and comfort; academic activities; and salaries and productivity., Results: In both 2014 and 2017, the majority of pediatric physiatrists who responded were women (~63%) and worked at an academic teaching hospital (~68%). Pediatric physiatrists most commonly held the title of assistant professor and were overrepresented in the Midwest. Overall, 55.8% of providers felt that access was adequate in their area whereas only 3.7% felt access was adequate across the country. In 2017, 52.5% of pediatric physiatrists participated in research or other scholarly activities with 44.2% reporting having published original research at some point in their careers. The inflation adjusted mean salary in 2014 ($227 360) was not statistically different than in 2017 ($232 634, P = .422). In both years, full professors reported the highest academic full-time salaries. Individuals having at least one leadership title also reported significantly higher average full-time salaries than individuals with no titles., Conclusions: Although gains have been made in terms of academic competitiveness and engagement in research in pediatric physiatry, there are areas of ongoing concern including large geographic practice variations with associated access to care problems, challenges with recruiting physicians to the field, and salary malalignment within the field of PM&R., (© 2019 American Academy of Physical Medicine and Rehabilitation.)

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.

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.

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.

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.

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.

Background: Parent empowerment is often an expressed goal in clinical pediatrics and in pediatric research, but the antecedents and consequences of parent empowerment are not well established., Objective: The objective of this systematic review was to synthesize potential antecedents and consequences of parent empowerment in healthcare settings., Eligibility Criteria: The inclusion criteria were (1) studies with results about parent empowerment in the context of children's healthcare or healthcare providers; and (2) qualitative studies, observational studies, and systematic reviews of such studies., Information Sources: We searched the databases of PubMed, Web of Science, and Google Scholar (2006-2017) and reference lists., Included Studies: Forty-four articles met the inclusion criteria., Synthesis of Results: We identified six themes within consequences of empowerment: increased parent involvement in daily care, improved symptom management, enhanced informational needs and tools, increased involvement in care decisions, increased advocacy for child, and engagement in empowering others. Six themes summarizing antecedents of empowerment also emerged: parent-provider relationships, processes of care, experiences with medical care, experiences with community services, receiving informational/emotional support, and building personal capacity and narrative. We synthesized these findings into a conceptual model to guide future intervention development and evaluation., Strengths and Limitations of Evidence: Non-English articles were excluded., Interpretation: Parent empowerment may enhance parent involvement in daily care and care decisions, improve child symptoms, enhance informational needs and skills, and increase advocacy and altruistic behaviors. Parent empowerment may be promoted by the parent-provider relationship and care processes, finding the right fit of medical and community services, and attention to the cognitive and emotional needs of parents., Clinical Registration No: PROSPERO 2017:CRD42017059478.

Background and Objectives: Little is known about the use of chronic medications (CMs) in children. We assessed the prevalence of CM use in children and the association of clinical characteristics and health care resource use with the number of CMs used., Methods: This is a retrospective study of children ages 1 to 18 years using Medicaid from 10 states in 2014 grouped by the annual number of CMs (0, 1, 2-4, 5-9, and ≥10 medications), which are defined as a dispensed ≥30-day prescription with ≥2 dispensed refills. Trends in clinical characteristics and health care use by number of CMs were evaluated with the Cochran-Armitage trend test., Results: Of 4 594 061 subjects, 18.8% used CMs. CM use was 44.4% in children with a complex chronic condition. Across all children, the most common CM therapeutic class was neurologic (28.9%). Among CM users, 48.8% used multiple CMs (40.3% used 2-4, 7.0% used 5-9, and 0.5% used ≥10). The diversity of medications increased with increasing number of CMs: for 1 CM, amphetamine stimulants were most common (29.0%), and for ≥10 CMs, antiepileptics were most common (7.1%). Of $2.3 billion total pharmacy spending, 59.3% was attributable to children dispensed multiple CMs. Increased CM use (0 to ≥10 medications) was associated with increased emergency department use (32.1% to 56.2%) and hospitalization (2.3% to 36.7%)., Conclusions: Nearly 1 in 5 children with Medicaid used CMs. Use of multiple CMs was common and correlated with increased health care use. Understanding CM use in children should be fundamentally important to health care systems when strategizing how to provide safe, evidence-based, and cost-effective pharmaceutical care to children., Competing Interests: POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose., (Copyright © 2019 by the American Academy of Pediatrics.)

Objective: To identify opportunities to improve care value for children with disabilities (CWD), we examined CWD prevalence within a commercially insured population and compared outpatient care quality and annual health plan spending levels for CWD relative to children with complex medical conditions without disabilities; children with chronic conditions that are not complex; and children without disabling, complex, or chronic conditions., Methods: This cross-sectional study comprised 1,118,081 person-years of Blue Cross Blue Shield Massachusetts data for beneficiaries aged 1 to 19years old during 2008 to 2012. We combined the newly developed and validated Children with Disabilities Algorithm with the Pediatric Medical Complexity Algorithm to identify CWD and non-CWD subgroups. We used 14 validated or National Quality Forum-endorsed measures to assess outpatient care quality and paid claims to examine annual plan spending levels and components., Results: CWD constituted 4.5% of all enrollees. Care quality for CWD was between 11% and 59% for 8 of 14 quality measures and >80% for the 6 remaining measures and was generally comparable to that for non-CWD subgroups. Annual plan spending among CWD was a median and mean 23% and 53% higher than that for children with complex medical conditions without disabilities, respectively; CWD mean and median values were higher than for all other groups as well., Conclusions: CWD were prevalent in our commercially insured population. CWD experienced suboptimal levels of care, but those levels were comparable to non-CWD groups. Improving the care value for CWD involves a deeper understanding of what higher spending delivers and additional aspects of care quality., (Copyright © 2018 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved.)

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., (Copyright © 2018 American Congress of Rehabilitation Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Among working age adults in the United States, there is a large, heterogeneous population that requires ongoing and elevated levels of healthcare and related services. At present, there are conflicting approaches to the definition and measurement of this population in health services research., Objective: An expert panel was convened by the National Institutes of Health with the objective of developing a population-level definition of Adults with Chronic Healthcare Needs (ACHCN). In addition, the panel developed a screening instrument and methods for its use in health surveys to identify and stratify the population consistently., Methods: The panel employed multiple methods over the course of the project, including scoping literature reviews, quantitative analyses from national data sources and cognitive testing., Results: The panel defined the ACHCN population as "Adults (age 18-65) with [1] ongoing physical, cognitive, or mental health conditions or difficulties functioning who [2] need health or related support services of a type or amount beyond that needed by adults of the same sex and similar age." The screener collects information on chronic health conditions, functional difficulties, and elevated use of or unmet need for healthcare services., Conclusions: Adapted from the Maternal and Child Health Bureau definition that identifies Children with Special Healthcare Needs, aligned with the ACS-6 disability measure, and consistent with the HHS Multiple Chronic Condition Framework, this definition and screener provide the research community with a common denominator for the identification of ACHCN., (Copyright © 2017 Elsevier Inc. All rights reserved.)

Background: There is a concerted effort underway to evaluate and reform our nation's approach to the health of people with ongoing or elevated needs for care, particularly persons with chronic conditions and/or disabilities., Objective: This literature review characterizes the current state of knowledge on the measurement of chronic disease and disability in population-based health services research on working age adults (age 18-64)., Methods: Scoping review methods were used to scan the health services research literature published since the year 2000, including medline, psycINFO and manual searches. The guiding question was: "How are chronic conditions and disability defined and measured in studies of healthcare access, quality, utilization or cost?", Results: Fifty-five studies met the stated inclusion criteria. Chronic conditions were variously defined by brief lists of conditions, broader criteria-based lists, two or more (multiple) chronic conditions, or other constructs. Disability was generally assessed through ADLs/IADLs, functional limitations, activity limitations or program eligibility. A smaller subset of studies used information from both domains to identify a study population or to stratify it by subgroup., Conclusions: There remains a divide in this literature between studies that rely upon diagnostically-oriented measures and studies that instead rely on functional, activity or other constructs of disability to identify the population of interest. This leads to wide ranging differences in population prevalence and outcome estimates. However, there is also a growing effort to develop methods that account for the overlap between chronic disease and disability and to "segment" this heterogeneous population into policy or practice relevant subgroups., (Copyright © 2018 Elsevier Inc. All rights reserved.)

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.

Purpose: To evaluate variables that modulate pain during intramuscular botulinum toxin A injections in children., Methods: As part of a Quality Improvement project, this retrospective analysis compared reported pain during and five minutes post injections with patient and procedural variables using subgroup and regression analyses (N= 593 procedures with 249 unique patients)., Results: Mean procedural pain for all procedures (n= 563) was 3.8 ± 3.0. Most children reported no pain (83.8%) or mild pain (12.1%) five minutes after the procedure. Provider, previous patient experience, and dose did not significantly impact pain. Linear regression analysis (R=2 0.64) demonstrated that younger age (p< 0.05), use of vapo-coolant spray or topical anesthetic (p< 0.01), and body region injected (p< 0.01) were significantly associated with increased procedural pain. Logistic regression (R=2 0.14) demonstrated that pain during the procedure (p< 0.001) and older age (p< 0.01) increased the likelihood of pain post-procedure. Utilization of personnel for distraction did not significantly predict pain ratings at either time point., Conclusion: Age, topical anesthesia, and injected region impact procedural pain and in nearly 96% of cases, patients report mild or no pain within five minutes. Additional research into these predictors is necessary, but short-lived procedural pain may suggest that frequent use of sedation/anesthesia is unnecessary.

Purpose: To evaluate for differences in neurodevelopmental outcomes at 30 months of age for children enrolled in the Management of Myelomeningocele Study (MOMS) based on the presence of hydrocephalus and cerebral shunts., Methods: Children with no hydrocephalus (N= 27), children with shunted hydrocephalus (N= 108), and children with unshunted hydrocephalus (N= 36) were compared at 30 months of age on the Bayley II Mental and Psychomotor Indices, the Peabody Developmental Motor Scales-2 and the Preschool Language Scale, 4th edition. Generalized linear models were used to adjust for factors significantly different between the groups at baseline. Additional analyses were conducted to evaluate the impact of the severity of hydrocephalus., Results: In unadjusted comparisons, statistically significant differences were noted between the three groups on the Peabody Gross Motor Quotient and thus the Total Motor Quotient. After adjustment, no statistically significant differences were identified. In subanalyses, children with more severe hydrocephalus fared worse on the Peabody Fine Motor Quotient (median 88 versus 94, p= 0.005), the Total Motor Quotient (median 70 versus 73, p= 0.02) and both Preschool Language Scale subtests (auditory comprehension: median 93 versus 104, p= 0.02 and expressive communication: median 95 versus 104.5, p= 0.01) and thus the total score (median 92 versus 105, p= 0.004). These results remained significant in the multivariable adjusted model., Conclusion: No neurodevelopmental differences were noted with children enrolled in MOMS across the three hydrocephalus/shunt groups, although severity of hydrocephalus was associated with poorer outcomes.

Purpose: To characterize the use of physical therapy (PT) and occupational therapy (OT) consultation in our pediatric intensive care unit (PICU)., Materials and Methods: We studied children aged 1week-18years admitted to a tertiary care PICU for ≥3days. Patient characteristics, details of PT and OT sessions and adverse events were collected. A multivariable logistic regression was performed to determine factors associated with receipt of PT and OT consultation with propensity analysis followed by a regression for factors associated with outcome., Results: Of 138 children studied, 40 (29%) received PT and OT consultation. Services were initiated 6.9±10.0 (mean±standard deviation) days after PICU admission. Range of motion (83%) was the most common therapy provided and 28% of patients were ambulated. Sixty-four of 297 (21.5%) sessions were deferred and 7 (2.4%) sessions were terminated early due to physiologic instability with no serious adverse events. Children who received PT and OT were older, more likely to require neuromuscular blocking agents, and had lower pre-PICU POPC scores (all p<0.05)., Conclusions: Data are needed to inform on the efficacy of rehabilitative therapies initiated in the ICU to improve outcome for critically ill children., (Copyright © 2017 Elsevier Inc. All rights reserved.)

Pain is a frequent and significant problem for children with impairment of the central nervous system, with the highest frequency and severity occurring in children with the greatest impairment. Despite the significance of the problem, this population remains vulnerable to underrecognition and undertreatment of pain. Barriers to treatment may include uncertainty in identifying pain along with limited experience and fear with the use of medications for pain treatment. Behavioral pain-assessment tools are reviewed in this clinical report, along with other strategies for monitoring pain after an intervention. Sources of pain in this population include acute-onset pain attributable to tissue injury or inflammation resulting in nociceptive pain, with pain then expected to resolve after treatment directed at the source. Other sources can result in chronic intermittent pain that, for many, occurs on a weekly to daily basis, commonly attributed to gastroesophageal reflux, spasticity, and hip subluxation. Most challenging are pain sources attributable to the impaired central nervous system, requiring empirical medication trials directed at causes that cannot be identified by diagnostic tests, such as central neuropathic pain. Interventions reviewed include integrative therapies and medications, such as gabapentinoids, tricyclic antidepressants, α-agonists, and opioids. This clinical report aims to address, with evidence-based guidance, the inherent challenges with the goal to improve comfort throughout life in this vulnerable group of children., Competing Interests: POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose., (Copyright © 2017 by the American Academy of Pediatrics.)

Objective: The quality of primary care delivered to Medicaid-insured children with disabilities (CWD) is unknown. We used the newly validated CWD algorithm (CWDA) to examine CWD prevalence among Medicaid enrollees 1 to 18 years old, primary care quality for CWD, and differences in primary care quality for CWD and non-CWD., Methods: Cross-sectional study using 2008 Medicaid Analytic eXtract claims data from 9 states, including children with at least 11 months of enrollment (N = 2,671,922 enrollees). We utilized CWDA to identify CWD and applied 12 validated or endorsed pediatric quality measures to assess preventive/screening, acute, and chronic disease care quality. We compared quality for CWD and non-CWD unmatched and matched on age, sex, and number of nondisabling chronic conditions and outpatient encounters., Results: CWDA identified 5.3% (n = 141,384) of our study population as CWD. Care quality levels for CWD were below 50% on 8 of 12 quality measures (eg, adolescent well visits [44.9%], alcohol/drug treatment engagement [24.9%]). CWD care quality was significantly better than the general population of non-CWD by +0.9% to +15.6% on 9 measures, but significantly worse for 2 measures, chlamydia screening (-3.4%) and no emergency department visits for asthma (-5.0%; all P < .01 to .001). Differences in care quality between CWD and non-CWD were generally smaller or changed direction when CWD were compared to a general population or matched group of non-CWD., Conclusions: One in 20 Medicaid-insured children is CWD, and the quality of primary care delivered to CWD is suboptimal. Areas needing improvement include preventive/screening, acute care, and chronic disease management., (Copyright © 2016 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved.)

Objectives: For asthma, attention-deficit/hyperactivity disorder (ADHD), and autism spectrum disorder (ASD), the objectives were to (1) describe the percent increases in prevalence and comorbidity and how these vary by poverty status, and (2) examine the extent to which poverty status is a predictor of higher than average comorbid conditions., Methods: Secondary analyses of the National Survey of Children's Health for years 2003, 2007, and 2011-2012 were conducted to identify trends in parent reported lifetime prevalence and comorbidity among children with asthma, ADHD, and ASD and examine variation by sociodemographic characteristics, poverty status, and insurance coverage. Using 2011-2012 data, multivariable regression was used to examine whether poverty status predicted higher than average comorbid conditions after adjusting for other sociodemographic characteristics., Results: Parent-reported lifetime prevalence of asthma and ADHD rose 18% and 44%, respectively, whereas the lifetime prevalence of ASD rose almost 400% (from 0.5% to 2%). For asthma, the rise was most prominent among the poor at 25.8%. For ADHD, the percent change by poverty status was similar (<100% federal poverty level [FPL]: 43.20%, 100% to 199% FPL: 52.38%, 200% to 399% FPL: 43.67%), although rise in ASD was associated with being nonpoor (200% to 399% FPL: 43.6%, ≥400% FPL: 36.0%). Publicly insured children with asthma, ADHD, and ASD also had significantly higher odds (1.9×, 1.6×, 3.0×, respectively) of having higher than average comorbidities., Conclusions: Poverty status differentially influenced parent-reported lifetime prevalence and comorbidities of these target disorders. Future research is needed to examine parent and system-level characteristics that may further explain poverty's variable impact., (Copyright © 2017 by the American Academy of Pediatrics.)

Children with medical complexity have extensive needs for health services, experience functional limitations, and are high resource utilizers. Addressing the needs of this population to achieve high-value health care requires optimizing care within the medical home and medical neighborhood. Opportunities exist for health care providers, payers, and policy makers to develop strategies to enhance care delivery and to decrease costs. Important outcomes include decreasing unplanned hospital admissions, decreasing emergency department use, ensuring access to health services, limiting out-of-pocket expenses for families, and improving patient and family experiences, quality of life, and satisfaction with care. This report describes the population of children with medical complexity and provides strategies to optimize medical and health outcomes., (Copyright © 2016 by the American Academy of Pediatrics.)

Background: The Management of Myelomeningocele Study was a multicenter, randomized controlled trial that compared prenatal repair with standard postnatal repair for fetal myelomeningocele., Objective: We sought to describe the long-term impact on the families of the women who participated and to evaluate how the timing of repair influenced the impact on families and parental stress., Study Design: Randomized women completed the 24-item Impact on Family Scale and the 36-item Parenting Stress Index Short Form at 12 and 30 months after delivery. A revised 15-item Impact on Family Scale describing overall impact was also computed. Higher scores reflected more negative impacts or greater stress. In addition, we examined Family Support Scale and Family Resource Scale scores along with various neonatal outcomes. Repeated measures analysis was conducted for each scale and subscale., Results: Of 183 women randomized, 171 women completed the Impact on Family Scale and 172 completed the Parenting Stress Index at both 12 and 30 months. The prenatal surgery group had significantly lower revised 15-item Impact on Family Scale scores as well as familial-social impact subscale scores compared to the postnatal surgery group (P = .02 and .004, respectively). There was no difference in total parental stress between the 2 groups (P = .89) or in any of the Parenting Stress Index Short Form subscales. In addition, walking independently at 30 months and family resources at 12 months were associated with both family impact and parental stress., Conclusion: The overall negative family impact of caring for a child with spina bifida, up to 30 months of age, was significantly lower in the prenatal surgery group compared to the postnatal surgery group. Ambulation status and family resources were predictive of impact on family and parental stress., Competing Interests: POTENTIAL CONFLICT OF INTEREST: The authors indicate they have no potential conflicts of interest to disclose., (Copyright © 2016 Elsevier Inc. All rights reserved.)

Objectives: To characterize patients who received tracheostomies for airway compromise or were initiated on long-term ventilation for chronic respiratory failure in PICUs and to examine variation in the incidence of initiation, patient characteristics, and modalities across sites., Design: Retrospective cross-sectional analysis., Settings: Seventy-three North American PICUs that participated in the Virtual Pediatric Systems, LLC., Patients: PICU patients admitted between 2009 and 2011., Interventions: None., Measurements and Main Results: Among 115,437 PICU patients, 1.8% received a tracheostomy or were initiated on long-term ventilation; 1,034 received a tracheostomy only, 717 were initiated on invasive ventilation, and 381 were initiated on noninvasive ventilation. Ninety percent had substantial chronic conditions and comorbidities, including more than 50% with moderate or worse cerebral disability upon discharge. Seven percent were initiated after a catastrophic injury/event. Across sites, there was variation in incidence of tracheotomy and initiation of long-term ventilation, ranging from 0% to 4.6%. There also was variation in patient characteristics, time to tracheotomy, number of extubations prior to tracheostomy, and the use of invasive ventilation versus noninvasive ventilation., Conclusions: Although the PICU incidence of initiation of tracheostomies and long-term ventilation was relatively uncommon, it suggests that thousands of children and young adults receive these interventions each year in North American PICUs. The majority of them have conditions and comorbidities that impose on-going care needs, beyond those required by artificial airways and long-term ventilation themselves., Competing Interests: Disclosures: The authors have no potential conflicts of interest to disclose.

Background: A major impediment to understanding quality of care for children with disabilities (CWD) is the lack of a method for identifying this group in claims databases. We developed the CWD algorithm (CWDA), which uses International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM) codes to identify CWD., Methods: We conducted a cross-sectional study that (1) ensured each of the 14,567 codes within the 2012 ICD-9-CM codebook was independently classified by 3 to 9 pediatricians based on the code's likelihood of indicating CWD and (2) triangulated the resulting CWDA against parent and physician assessment of children's disability status by using survey and chart abstraction, respectively. Eight fellowship-trained general pediatricians and 42 subspecialists from across the United States participated in the code classification. Parents of 128 children from a large, free-standing children's hospital participated in the parent survey; charts of 336 children from the same hospital were included in the abstraction study., Results: CWDA contains 669 ICD-9-CM codes classified as having a ≥75% likelihood of indicating CWD. Examples include 318.2 Profound intellectual disabilities and 780.72 Functional quadriplegia. CWDA sensitivity was 0.75 (95% confidence interval 0.63-0.84) compared with parent report and 0.98 (0.95-0.99) compared with physician assessment; its specificity was 0.86 (0.72-0.95) and 0.50 (0.41-0.59), respectively., Conclusions: ICD-9-CM codes can be classified by their likelihood of indicating CWD. CWDA triangulates well with parent report and physician assessment of child disability status. CWDA is a new tool that can be used to assess care quality for CWD., (Copyright © 2015 by the American Academy of Pediatrics.)

Objective: To examine the prevalence trends and coexisting conditions in attention-deficit/hyperactivity disorder (ADHD), autism spectrum disorder (ASD), and intellectual disability (ID) in the pediatric Supplemental Security Income (SSI) population and general population., Methods: The Social Security Administration (SSA) provided data on primary and secondary diagnoses of children qualifying for SSI for years 2000 to 2011. We compared SSA data with 2000-2011 National Health Interview Survey data on the prevalence of mental health diagnoses among children in the general population living between 0 and 199% of the federal poverty line. We utilized linear regression analysis to test the statistical significance of differences in the trends of the conditions' prevalence., Results: Over this time period, the SSI population experienced increases in ADHD (5.8%) and ASD (7.2%) and a decrease in ID (-10.3%). Comparison with change in the general population indicated no significant difference in ADHD but significant differences in ASD and ID. Relative percentage changes reflect similar changes. The SSI population qualifying for SSI with ADHD (70.8%) had higher rates of coexisting conditions than the general population (66.1%), but lower rates of coexisting conditions for ASD and ID., Conclusions: ADHD is on the rise among children receiving SSI and in the general population. This suggests that the rise of ADHD in the SSI population is expected and does not represent a misallocation of resources. Changes described among the SSI population in ASD and ID may allude to diagnostic/coding trends and/or true changes in prevalence. Limitations arise from the comparability of the 2 data sets., (Copyright © 2015 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved.)

Purpose: The purpose of the study is to compare demographics, intensive care unit (ICU) admission characteristics, and ICU outcomes among adults with childhood-onset chronic conditions (COCCs) admitted to US pediatric and adult ICUs., Materials and Methods: Retrospective cross-sectional analyses of 6088 adults aged 19 to 40 years admitted in 2008 to 70 pediatric ICUs that participated in the Virtual Pediatric Intensive Care Unit Performance Systems and 50 adult ICUs that participated in Project IMPACT., Results: Childhood-onset chronic conditions were present in 53% of young adults admitted to pediatric units, compared with 9% of those in adult units. The most common COCC in both groups were congenital cardiac abnormalities, cerebral palsy, and chromosomal abnormalities. Adults with COCC admitted to pediatric units were significantly more likely to be younger, have lower functional status, and be nontrauma patients than those in adult units. The median ICU length of stay was 2 days, and the intensive care unit mortality rate was 5% for all COCC patients with no statistical difference between pediatric or adult units., Conclusions: There are marked differences in characteristics between young adults with COCC admitted to pediatric ICUs and adult ICUs. Barriers to accommodating these young adults may be reasons why many such adults have not transitioned from pediatric to adult critical care., (Copyright © 2014 Elsevier Inc. All rights reserved.)

Background: Over the past half century the prevalence of childhood disability increased dramatically, coupled with notable increases in the prevalence of mental health and neurodevelopmental conditions. This study provides a detailed assessment of recent trends in childhood disability in relation to health conditions and sociodemographic factors., Methods: Secondary data analysis of National Health Interview Survey (NHIS) datasets 2001-2002, 2004-2005, 2007-2008, and 2010-2011 (N = 198888) was conducted to calculate the prevalence, rate of change, severity, and sociodemographic disparities of parent-reported childhood disability., Results: The prevalence of childhood disability has continued to increase, growing by 15.6% between 2001-2002 and 2010-2011. Nearly 6 million children were considered disabled in 2010-2011. Children living in poverty experienced the highest rates of disability, 102.6 cases per 1000 population in 2010-2011, but unexpectedly, children living in households with incomes ≥ 400% above the federal poverty level experienced the largest increase (28.4%) over this 10-year period. The percentage of disability cases related to any physical health condition declined 11.8% during the decade, whereas cases related to any neurodevelopmental or mental health condition increased by 20.9%., Conclusions: Over the past decade, parent-reported childhood disability steadily increased. As childhood disability due to physical conditions declined, there was a large increase in disabilities due to neurodevelopmental or mental health problems. For the first time since the NHIS began tracking childhood disability in 1957, the rise in reported prevalence is disproportionately occurring among socially advantaged families. This unexpected finding highlights the need to better understand the social, medical, and environmental factors influencing parent reports of childhood disability., (Copyright © 2014 by the American Academy of Pediatrics.)

Importance: Growing numbers of persons with childhood-onset chronic illnesses are surviving to adulthood. Many use pediatric hospitals for their inpatient needs. To our knowledge, the prevalence and characteristics of adult pediatric intensive care unit patients have not been reported., Objectives: To estimate the proportion of adults admitted to pediatric intensive care units (PICUs), characterize them, and compare them with older adolescents., Design: One-year cross-sectional analysis., Setting: Pediatric intensive care units in the United States that participated in the Virtual Pediatric Intensive Care Unit Systems., Participants: Pediatric intensive care unit patients 15 years or older admitted in 2008., Main Outcome Measures: We compared adults with adolescents across clinical characteristics and outcomes. Mixed-effects logistic regression was used to estimate the independent association of age with PICU mortality., Results: Seventy PICUs had 67 629 admissions; 1954 admissions (2.7%) were patients 19 years or older; and 9105 admissions (13.5%) were patients aged 15 to 18 years. The proportion of adults (≥19 years) varied considerably by PICU (range, 0%-9.2%). As age increased, the proportion of patients who had a complex chronic condition and planned or perioperative admissions increased; the proportion of trauma-related admissions decreased. Patients aged 21 to 29 years had a 2 times (95% CI, 1.3-3.2; P = .004) greater odds of PICU mortality compared with adolescent patients, after adjusting for Paediatric Index of Mortality score, sex, trauma, and having a complex chronic condition. Being 30 years or older was associated with a 3.5 (95% CI, 1.3-9.7; P = .01) greater odds of mortality., Conclusions and Relevance: In this multi-institutional study, adults constituted a small but high-risk proportion of patients in some PICUs, suggesting that these PICUs should have plans and protocols specifically focused on this group.

Aims: To describe the inpatient health service use and insurance types for hospitalized children with spina bifida compared to children generally and to evaluate hospital discharge and insurance type trends over a 10-year study period., Methods: The cross-sectional secondary data analyses were conducted using the 2000, 2003, 2006 and 2009 Kid's Inpatient Databases. Diagnoses were identified by ICD-9 codes and hospital type was categorized based on the National Association of Children's Hospitals and Related Institutions designations. Chi-squared tests and the Wald test of trend were used for the statistical analyses., Results: Children with spina bifida are more likely to receive their inpatient care in children's hospitals or pediatric units compared to all children. Children with spina bifida were most commonly admitted for shunt malfunction and repair. The percentage of children covered by Medicaid rose during the study period for both children with spina bifida and children generally., Conclusions: This study is the first of its kind to document longitudinal trends in inpatient utilization, insurance type, and reason for admission for children with spina bifida. The changing trends in insurance coverage should be closely monitored because insurance is closely linked to health care access, which is linked to health outcomes.

The need for more rehabilitation-oriented research has been well documented; however, there has been less discussion in the literature of the personal rewards for embarking on a physiatry career with a research component. To that end, this series of biographical vignettes highlights the inspiration, path, and rewards experienced by 7 academic physiatrists at various stages in their careers. As described, physiatric research can be enriching in many ways. Academic physiatrists work within a thoughtful and dynamic community, can affect health care policy and the clinical treatment of entire patient populations, have the chance to mentor a younger generation of physicians and scientists, and use creative means to continuously pursue ideas aimed at improving the care and quality of life of our patient population.

Anti-N-methyl-D-aspartate (NMDA)-receptor encephalitis is a serious, complex, and potentially fatal disease in children. Children with this condition frequently present with altered mental status, rapid functional deterioration, and seizures. Despite aggressive treatment with immune therapy such as corticosteroids, intravenous immunoglobin, and plasmapheresis, children often need extensive rehabilitative services and can be left with lasting deficits. In this case series, we report on six known consecutive pediatric cases of N-methyl-D-aspartate-receptor antibody encephalitis in Northern California requiring comprehensive inpatient rehabilitation. The children presented with a variety of symptoms and had waxing and waning clinical courses. All children progressed well through their rehabilitation programs but were discharged home with persistent functional deficits. At follow-up, all but one child had lasting deficits. Because of the complicated management and extensive rehabilitation needs of children with anti-N-methyl-D-aspartate-receptor encephalitis, physiatrists and other rehabilitation providers should be knowledgeable about this complex condition.

Children with brain tumors experience significant alterations to their health and well-being due to the tumors themselves and oncologic treatment. Caring for children with brain tumors can have significant impacts on families, especially during and shortly after treatment. In this study of the impacts on families caring for children undergoing proton radiation therapy for brain tumors, the authors found that families experienced a broad array of negative impacts. Families reported feeling like they were living on a roller coaster, feeling that others treated them differently, and having to give up things as a family. In the multivariable linear regression model, older age of the child and higher reported child health-related quality of life were associated with less family impact. The presence of concurrent chemotherapy was associated with increased family impact. This is the first study to specifically evaluate the families of children being treated with proton radiation therapy. The findings in this study are consistent with the findings in other studies of children treated with standard therapy that show that families experience a variety of stressors and negative impacts while their children are receiving treatment. Health care providers should be aware of the potential impacts on families of children with brain tumors and their treatment to provide robust services to meet the health, psychological, and social needs of such children and their families.

Family-centered care (FCC) is a partnership approach to health care decision-making between the family and health care provider. FCC is considered the standard of pediatric health care by many clinical practices, hospitals, and health care groups. Despite widespread endorsement, FCC continues to be insufficiently implemented into clinical practice. In this paper we enumerate the core principles of FCC in pediatric health care, describe recent advances applying FCC principles to clinical practice, and propose an agenda for practitioners, hospitals, and health care groups to translate FCC into improved health outcomes, health care delivery, and health care system transformation.

Objective: The aims of this study were to profile and compare the health and health services characteristics for children with special health care needs (CSHCN), with and without disabilities, and to determine factors associated with unmet need., Methods: Secondary data analysis of the 2005-2006 National Survey of Children with Special Health Care Needs was conducted. The sociodemographics, health, and health services of CSHCN with and without disabilities were compared. Multivariable logistic regression was employed to examine factors associated with unmet need for health services., Results: Children from minority racial and ethnic groups and children living in or near poverty were over-represented among CSHCN with disabilities, compared with other CSHCN. Statistically higher percentages of CSHCN with disabilities had behavioral problems (39.6% vs 25.2%), anxiety/depressed mood (46.1% vs 24.0%), and trouble making/keeping friends (38.1% vs 15.6%) compared with other CSHCN. Thirty-two percent of CSHCN with disabilities received care in a medical home compared with 51% of other CSHCN. CSHCN with disabilities had higher rates of need and unmet need than other CSHCN for specialty care, therapy services, mental health services, home health, assistive devices, medical supplies, and durable medical equipment. The adjusted odds of unmet need for CSHCN with disabilities were 71% higher than for other CSHCN., Conclusion: CSHCN with disabilities had more severe health conditions and more health services need, but they less commonly received care within a medical home and had more unmet need. These health care inequities should be amenable to policy and health service delivery interventions to improve outcomes for CSHCN with disabilities., (Copyright © 2011 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved.)