Estimates of functional muscle strength from a novel progressive lateral step-up test are feasible, reliable, and related to physical activity in children with cerebral palsy.

OBJECTIVE: To determine if estimates of functional muscle strength from a novel progressive lateral-step-up test (LSUT) are feasible, reliable, and related to physical activity in children with cerebral palsy (CP). DESIGN: Cross-sectional; test-retest reliability Subjects/Patients: Children with CP and typically developing control children (n = 45/group). METHODS: An LSUT with 10, 15, and 20 cm step heights was completed. It was repeated 4 weeks later in 20 children with CP. A composite score of LSUT was calculated based on the step height and number of repetitions completed. Physical activity was assessed using monitors worn on the ankle and hip. RESULTS: Only 4 (13%) of the children with CP were unable to complete a lateral step-up repetition without assistance. All children were able to complete at least 1 repetition with assistance, though more than twice as many children with CP required assistance at 15 and 20 cm step heights than at the 10 cm step height (p < 0.01). Children with CP had 59 to 63% lower LSUT performance, 37% lower physical activity assessed at the ankle, and 22% lower physical activity assessed at the hip than controls (all p < 0.01). The intra-class correlation coefficient ranged from 0.91 to 0.96 for LSUT performance at the different step heights and was 0.97 for the composite score. All LSUT performance measures were positively related to ankle physical activity in children with CP (r range = 0.43 to 0.47, all p < 0.01). Only performance at 20 cm and the composite score were positively related to hip physical activity (r = 0.33 and 0.31, respectively, both p < 0.05). The relationship between the LSUT performance and physical activity at both the ankle and hip increased when age and sex were statistically controlled (model r range = 0.55 to 0.60, all p < 0.001). CONCLUSION: Estimates of functional muscle strength from a novel progressive LSUT are feasible, reliable, and positively related to physical activity in children with CP.

A Cross-Sectional Study of Disparities in Healthcare Transition in Cerebral Palsy.

Background: Cerebral palsy (CP) is the most common physical disability among children, affecting their lifespan. While CP is typically nonprogressive, symptoms can worsen over time. With advancements in healthcare, more children with CP are reaching adulthood, creating a greater demand for adult care. However, a significant lack of adult healthcare providers exists, as CP is predominantly considered a pediatric condition. This study compares the transition experiences of children with CP compared to those with other developmental disabilities (DDs) and typically developing children (TDC). Methods: This study utilizes cross-sectional data from the National Survey of Children's Health (NSCH) from 2016-2020, including 71,973 respondents aged 12-17. Children were categorized into three groups: CP (n = 263), DD (n = 9460), and TDC (n = 36,053). The analysis focused on the receipt of transition services and identified demographic and socioeconomic factors influencing these services. Results: Only 9.7% of children with CP received necessary transition services, compared to 19.7% of children with DDs and 19.0% of TDC. Older age, female sex, non-Hispanic white ethnicity, and higher household income were significant predictors of receiving transition services. Children with CP were less likely to have private time with healthcare providers and receive skills development assistance compared to other groups. Conclusions: The findings highlight disparities and critical needs for targeted interventions and structured transition programs to improve the transition from pediatric to adult healthcare for children with CP. Addressing disparities in service receipt and ensuring coordinated, continuous care are essential for improving outcomes for children with CP.

Mental health, physical activity, and sports among children with cerebral palsy.

BACKGROUND: People with cerebral palsy (CP) may be at an increased risk for mental health disorders due to co-occurring physical and communication limitations associated with the condition. Participation in physical activity (PA) and sports may provide opportunities to increase socialization and improve physical function. The purpose of this study was to examine associations between participation in daily PA and sports and mental health among children with CP. METHOD: Participants included children with CP (n = 458) and typically developing children (TDC) (n = 40 091) 6-17 years whose parents participated in the 2016-2020 National Survey of Children's Health. Mental health disorders included anxiety, depression, behavioural disorders and attention-deficit/hyperactivity disorder (ADHD). RESULTS: Compared with TDC, children with CP had a higher prevalence of mental health disorders (75.5% vs. 54.2%) and were more likely to receive mental health care (21.5% vs. 14.6%). Controlling for sociodemographic variables, children with CP were more likely to experience anxiety [odds ratio (OR) 2.6; 95% confidence interval (CI) = 2.1-3.3), depression (OR 1.8; 95% CI 1.3-2.4), behavioural disorders (OR 4.8; 95% CI 3.8-6.0) and ADHD (OR 2.1; 95% CI 1.6-2.6). The likelihood of these conditions decreased when children participated in sports for anxiety (OR 2.2; 95% CI 1.8-2.8), depression (OR = 1.4; 95% CI 1.0-2.0), behavioural disorders (OR 4.1; 95% CI 3.2-5.1) and ADHD (OR 1.9; 95% CI 1.5-2.5). The likelihood for anxiety (OR 2.3; 95% CI 1.8-2.8), depression (OR 1.4; 95% CI 1.0-1.9), behavioural disorders (OR 4.4; 95% CI 3.5-5.5) and ADHD (OR 1.9; 95% CI 1.5-2.4) also decreased with participation in daily PA. CONCLUSIONS: There is an overwhelming disparity in the number of children with CP who have a mental health disorder and those who receive mental health care. Increasing access to participation in sports and PA may be beneficial.

The Relationship Between Physical Activity and School Success Among Children With and Without Special Health Care Needs.

BACKGROUND: School-environments are thought to be strong influences of behavioral choices. There is limited research available on the role of physical activity (PA) and school success among children with special health care needs (CSHCN). The purpose of this study was to explore differences in PA among CSHCN and non-CSHCN and how the school success index is related to PA in both groups. METHODS: Data were taken from new version of the National Survey of Children's Health (NSCH), which consolidated questions from the previous NSCH and the National Survey of Children with Special Health Care Needs (NS-CSHCN). Chi-square and logistic regression analyses were employed to examine group differences. RESULTS: There were significant differences among both subgroups, although most school-aged children did not meet recommended PA guidelines. Chi-squared analyses indicated; school engagement and the parent's perception of child safety at school were associated with the likelihood of meeting PA guidelines. Logistic regression analyses showed that the odds of meeting PA guidelines were associated with the school success index. CONCLUSIONS: Comprehensive school health programs should focus on PA both subgroups. School health educators should continue to advocate for safe and structured extracurricular activities to improve the child and adolescent's engagement and overall well-being.

Preferential deficit of fat-free soft tissue in the appendicular region of children with cerebral palsy and proposed statistical models to capture the deficit.

BACKGROUND: Cerebral palsy (CP) is a neurological disorder characterized by a profound skeletal muscle deficit. However, whether there is a regional-specific skeletal muscle deficit in children with CP is unknown. The purpose of this study was to determine whether fat-free soft tissue mass (FFST), a commonly used surrogate for skeletal muscle mass, is more compromised in the limbs than in the trunk in children with CP. A second purpose was to determine whether physical characteristics can be used to accurately estimate appendicular FFST (AFFST) in children with CP. METHODS: Forty-two children with CP (4-13 y) and 42 typically developing children matched to children with CP for sex, age and race were studied. Whole body FFST (FFSTwhole), FFST in the upper limbs (FFSTupper), FFST in the lower limbs (FFSTlower), the ratio of AFFST to height (AFFST/ht), the ratio of AFFST to height2 (AFFST/ht2) and non-appendicular FFST were estimated from dual-energy X-ray absorptiometry. Statistical models were developed to estimate AFFST, AFFST/ht and AFFST/ht2 in both groups of children, and the leave-one-out method was used to validate the models. RESULTS: Children with CP had 21% lower FFSTwhole, 30% lower AFFST, 34% lower FFSTlower, 14% lower non-appendicular FFST, 23% lower AFFST/ht, 19% lower AFFST/ht2 and 9% lower AFFST/FFSTwhole (all p < 0.05). Statistical models developed using data from typically developing children overestimated AFFST, AFFST/ht and AFFST/ht2 by 35%, 30% and 21% (all p < 0.05), respectively, in children with CP. Separate models developed using data from children with CP yielded better accuracy, with the estimated results highly correlated (r2 = 0.78, 0.66 and 0.50, respectively; all p < 0.001) and not different from calculated AFFST, AFFST/ht and AFFST/ht2 (all p > 0.99). However, when the difference in estimated values and measured values of AFFST, AFFST/ht and AFFST/ht2 were plotted against measured values, there was an inverse relationship (r = -0.38, -0.47 and -0.61, respectively, all p < 0.05). CONCLUSION: Children with CP have a remarkable deficit in FFST that is more pronounced in the appendicular than in the non-appendicular region and more pronounced in the lower than in the upper limbs. Preliminary models developed using data from children with CP can provide reasonable estimates of AFFST and indexes of AFFST relative to height, but further development of the models may be needed.

Community-Based Upper Extremity Power Training for Youth with Cerebral Palsy: A Pilot Study.

Aim: To examine the effects of an upper-extremity, community-based, and power-training intervention.Methods: Twelve participants with cerebral palsy (CP) [8 males, 4 females; mean age 14 years 6 months (SD 5 years 4 months), range 7-24] were randomly assigned to a rest-training (RT; n = 6) or training-rest (n = 6) group in this randomized, cross-over design. Training took place in participants' home or school, three times per week for 6 weeks. We examined changes in upper extremity average power output (Pavg) in watts (W) and changes in function via the Pediatric Outcomes Data Collection Instrument (PODCI).Results: Each participant completed at least 15 of the 18 total training sessions (91.2% adherence). Pavg increased 92.2% on average among participants (p < .05). There was a significant three-way interaction among treatment, sequence, and period with the data stratified by (Bimanual Fine Motor Function [BFMF]) level on the pain subscale of the PODCI (p = 0.0118). All participants decreased pain after training with the exception of individuals with lower functioning (BFMF II-V) in the RT group.Conclusion: A community-based upper extremity power-training intervention was feasible and effective at improving power among young people with CP and has the potential to improve pain.

Using participatory action research to examine barriers and facilitators to physical activity among rural adolescents with cerebral palsy.

Purpose: The purpose of this study was to use a qualitative, community-based participatory action research method - Photovoice - to identify perceived facilitators and barriers to physical activity among adolescents with cerebral palsy (CP) in a rural community.Materials and methods: Fifteen participants including adolescents with CP (n = 7) and parents (n = 8) were included in this study. The researchers followed the nine-step methodology recommended for Photovoice. During the training session, participants completed versions of the Barriers to Physical Activity Questionnaire for People with Mobility Impairments. This questionnaire was used to generate descriptive information about participant barriers and facilitators. Participants were given 14 days to take photographs after which researchers used in-depth and focus group interviews structured by the SHOWeD method. Content analysis of transcripts was used to identify common themes.Results and conclusions: Photographs and accompanying text were presented to local stakeholders and an action plan to increase physical activity for adolescents with CP was created. Perceived barriers included lack of inclusiveness, family isolation, and limited accessibility of equipment and resources. Facilitators included support services for families and adaptive sport leagues. Photovoice serves as a powerful tool to initiate change to promote physical activity among rural adolescents with CP.Implications for rehabilitationAdolescents with cerebral palsy living in rural areas face unique barriers to physical activity.Accessibility of equipment and the structural environment can serve as barriers to participation.Lack of accessibility can lead to feelings of isolation.Families need support services outside of rehabilitation settings to support physical activity for their children and overcome potential barriers.

Parent Perspectives on Health and Functioning of School-Aged Adolescents With Disabilities.

BACKGROUND: Youth living with disabilities are at risk of experiencing poor health outcomes. Coordinated school health programs have an opportunity to help youth with disabilities and their families through health education, health services, and community engagement. The World Health Organization developed the International Classification of Functioning, Disability, and Health (ICF) as a framework to analyze factors related to health conditions. We used the ICF to examine parental perceptions of health and function among students with disabilities living in rural and urban areas. METHODS: We surveyed parents (N = 71) using the parent-report versions of the Pediatric Outcomes Data Collection Instrument and Child Health and Illness Profile. From this group, parents were asked to volunteer to participate in in-depth, individual interviews (N = 18). The interviews were audio-recorded and transcribed verbatim. Researchers used the ICF linking rules to analyze and code the transcriptions. Emergent themes were assigned numerical ICF codes. RESULTS: There were more similarities than differences among rural and urban families. Children living with disabilities face significant environmental barriers regardless of context. CONCLUSIONS: Schools can facilitate education to improve the quality of life of parents and families of children with disabilities. School authorities should consider the many environmental barriers both urban and rural these families face in the community. The ICF can be used as a framework for program planning for community-based, health education for this population.

Predictors of Coordinated and Comprehensive Care Within a Medical Home for Children With Special Healthcare (CHSCN) Needs.

The purpose of this study was to examine predictors of coordinated and comprehensive care within a medical home among children with special health care needs (CSHCN). The latest version of the National Survey of Children with Special Health Care Needs (NS-CSHCN) employed a national random-digit-dial sample whereby US households were screened, resulting in 40,242 eligible respondents. Logistic regression analyses were performed modeling the probability of coordinated, comprehensive care in a medical home based on shared decision-making and other factors. A total of 29,845 cases were selected for inclusion in the model. Of these, 17,390 cases (58.3%) met the criteria for coordinated, comprehensive care in a medical home. Access to a community-based service systems had the greatest positive impact on coordinated, comprehensive care in a medical home. Adequate insurance coverage and being White/Caucasian were also positively associated with the dependent variable. Shared decision-making was reported by 72% of respondents and had a negative, but relatively negligible impact on coordinated, comprehensive care in a medical home. Increasing age, non-traditional family structures, urban residence, and public insurance were more influential, and negatively impacted the dependent variable. Providers and their respective organizations should seek to expand and improve health and support services at the community level.

"When everything changes:" Parent perspectives on the challenges of accessing care for a child with a disability.

BACKGROUND: Health disparities exist among individuals living in rural and urban contexts in terms of access to health care and overall mortality. These disparities are typically greater for youth with disabilities living in rural areas, who face additional barriers in receiving health and support services specific to their disability. Parents are typically the ones responsible for coordinating the care needed by children with a disability; however, with numerous barriers present families are not provided adequate support to care for a child with disabilities. OBJECTIVE: The purpose of this study was to examine barriers and facilitators to accessing health and support services among urban and rural families of children with disabilities. METHODS: In-depth interviews were conducted with parents who provide care for an adolescent with a disability. The sample was comprised of parents from one rural county (N = 9) and one urban county (N = 10) in Georgia. Parental interviews were conducted face to face by a trained researcher. Each interview was audio-recorded. The recordings were transcribed and content analysis used to create codes and identify emerging themes. RESULTS: The common themes found during the analysis include accessibility of health and support resources, transitions, and social isolation. CONCLUSIONS: When comparing urban and rural areas, barriers to access do differ in terms of availability, but analysis revealed more similarities existed among parents from both contexts. Efforts must be made to increase opportunities for youth with disabilities to become connected with the local community in order to improve quality of life for families.

VERB™ Summer Scorecard: increasing tween girls' vigorous physical activity.

OBJECTIVE: We assessed changes in the frequency of self-reported physical activity (PA) among tween girls exposed and not exposed to the VERB™ Summer Scorecard (VSS) intervention in Lexington, Kentucky, during 2004, 2006, and 2007. METHODS: Girls who reported 0-1 day per week of PA were classified as having little or no PA. Girls who reported 2-3 days of PA were classified as low PA performers; 4-5 days of PA were labeled as moderate performers; and 6-7 days of PA were identified as high performers. Logit regression analysis of survey data from girls identified trends in PA frequency across time. RESULTS: In 2004, participant girls were more likely than girls unfamiliar with VSS (reference group girls) to report high frequency of PA (OR = 1.44, CI = 1.18, 1.70). In 2006, participants were statistically less likely than reference group girls to report low frequency of PA (OR = 1.75, CI = 1.33, 2.21). In 2007, VSS participants were consistently more likely to report moderate frequency (OR = 1.56, CI = 1.35, 1.77) and high frequency of PA (OR = 1.44, CI = 1.24, 1.64) than reference group girls. CONCLUSION: An innovative, community-driven intervention demonstrated promise for increasing PA among tween girls. VSS may have transportability to other communities to help reverse the secular trend of declining PA for this population segment.