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.

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.

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.

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.

Objective

To estimate the prevalence of chronic conditions among children admitted to U.S. pediatric intensive care units and to assess whether patients with complex chronic conditions experience pediatric intensive care unit mortality and prolonged length of stay risk beyond that predicted by commonly used severity-of-illness risk-adjustment models.

Design, setting, and patients

Retrospective cohort analysis of 52,791 pediatric admissions to 54 U.S. pediatric intensive care units that participated in the Virtual Pediatric Intensive Care Unit Systems database in 2008.

Measurements

Hierarchical logistic regression models, clustered by pediatric intensive care unit site, for pediatric intensive care unit mortality and length of stay >15 days. Standardized mortality ratios adjusted for severity-of-illness score alone and with complex chronic conditions.

Main results

Fifty-three percent of pediatric intensive care unit admissions had complex chronic conditions, and 18.5% had noncomplex chronic conditions. The prevalence of these conditions and their organ system subcategories varied considerably across sites. The majority of complex chronic condition subcategories were associated with significantly greater odds of pediatric intensive care unit mortality (odds ratios 1.25-2.9, all p values < .02) compared to having a noncomplex chronic condition or no chronic condition, after controlling for age, gender, trauma, and severity-of-illness. Only respiratory, gastrointestinal, and rheumatologic/orthopedic/psychiatric complex chronic conditions were not associated with increased odds of pediatric intensive care unit mortality. All subcategories were significantly associated with prolonged length of stay. All noncomplex chronic condition subcategories were either not associated or were negatively associated with pediatric intensive care unit mortality, and most were not associated with prolonged length of stay, compared to having no chronic conditions. Among this group of pediatric intensive care units, adding complex chronic conditions to risk-adjustment models led to greater model accuracy but did not substantially change unit-level standardized mortality ratios.

Conclusions

Children with complex chronic conditions were at greater risk for pediatric intensive care unit mortality and prolonged length of stay than those with no chronic conditions, but the magnitude of risk varied across subcategories. Inclusion of complex chronic conditions into models of pediatric intensive care unit mortality improved model accuracy but had little impact on standardized mortality ratios.

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.

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.

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. 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. 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). 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.

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.