Adults with Cerebral Palsy Require Ongoing Neurologic Care: A Systematic Review.

Cerebral palsy (CP) neurologic care and research efforts typically focus on children. However, most people with CP are adults. Adults with CP are at increased risk of new neurologic conditions, such as stroke and myelopathy, that require ongoing neurologic surveillance to distinguish them from baseline motor impairments. Neurologic factors could also contribute to the motor function decline, chronic pain, and chronic fatigue that are commonly experienced by adults with CP. Based on a systematic literature review, we suggest (1) guidelines for neurologic surveillance and neurologist referral and (2) clinical research questions regarding the evolving neurologic risks for adults with CP. ANN NEUROL 2021;89:860-871.

Characteristics of Interventions to Improve Bone Health in Children With Cerebral Palsy: A Systematic Review.

PURPOSE: A systematic review evaluated exercise parameters and ages that produced the most improvement in bone among individuals with cerebral palsy (CP) ages 3 to 21 years. METHODS: PubMed, Scopus, Ebscohost, and Web of Science identified potential articles. Covidence was used to identify eligible citations and assess bias. The osteogenic index (OI) was used to evaluate intervention parameters. RESULTS: The database search identified 312 citations. Twelve full-text articles were included. A 1-hour calisthenic exercise program performed 2 to 3 times a week for 8 months targeting each body region had the highest effect size and a substantial OI. Most of the interventions reviewed had low OIs. Activities of longer duration and greater intensity had greater OIs and prepubertal age-enhanced treatment effects. CONCLUSION: Bone interventions for individuals with CP have low OIs, and principles of mechanostat theory should be applied to exercise dosing.

Designing Exercise to Improve Bone Health Among Individuals With Cerebral Palsy.

PURPOSE: Individuals with cerebral palsy (CP), ambulatory or not, have less bone strength and density than their peers. Aging individuals with CP are at a higher risk for nontraumatic fractures, progressive deformity, pain, and spinal stenosis. Critical periods for skeletal formation are during prepuberty and adolescence. Applying mechanostat theory to exercise design for individuals with CP may be beneficial. METHODS: Principles of mechanostat theory, particularly the osteogenic index, is applied to guide the design of exercise programs based on varying levels of physical capacity. RESULTS: Recommendations are made for optimizing dosing of a variety of interventions for improving bone health among individuals with CP based on mechanostat theory with specific type, number of repetitions, and frequency. CONCLUSIONS: Researchers and clinicians are called to action to consider the role of exercise throughout the lifespan for all individuals with CP, regardless of level of severity.

Caregiver knowledge and preferences for gross motor function information in cerebral palsy.

AIM: To determine caregiver knowledge and preferences for gross motor information and examine differences across Gross Motor Function Classification System (GMFCS) levels. METHOD: A questionnaire was developed. Respondents reported GMFCS knowledge, preference for knowledge, and experience with GMFCS and motor curve information. RESULTS: In total, 303 caregivers of children with cerebral palsy (CP) (GMFCS level I: 22%; GMFCS level II: 16%; GMFCS level III: 15%; GMFCS level IV: 23%; GMFCS level V: 24%) completed the questionnaire. Forty-five per cent of caregivers knew the GMFCS level at survey, and only 31% knew how their child's motor development compared with others of similar age and level. Caregiver education level was associated with knowledge (p<0.001). Most prefer discussing motor development with a therapist. Of caregivers who knew their child's GMFCS level at survey, 83% reported it would be helpful to revisit the topic over time. Compared with GMFCS level IV and V, caregivers of children in GMFCS levels I to III preferred to learn at the same time as CP diagnosis, (p=0.04) and were more likely to report having received visual aids (p=0.04). Caregivers of children in GMFCS levels IV and V found it more difficult to learn their child's level (p<0.001) versus those caring for children of GMFCS levels I to III, and reported seeing pictures with descriptions more informative (p=0.03). INTERPRETATION: Caregivers of children with CP may not know GMFCS and motor curve information, and vary in experience and preferences for this information. WHAT THIS PAPER ADDS: Fewer than half of caregivers of children with cerebral palsy (CP) know their child's Gross Motor Function Classification System level. Most want to know how their child's function compares to other children with CP. The majority of caregivers would like to revisit the topic over time. Caregivers want to discuss gross motor information with the therapist and doctor.

Coupling Timing of Interventions With Dose to Optimize Plasticity and Participation in Pediatric Neurologic Populations.

PURPOSE: The purpose of this article is to propose that coupling of timing of interventions with dosing of interventions optimizes plasticity and participation in pediatric neurologic conditions, specifically cerebral palsy. Dosing includes frequency, intensity, time per session, and type of intervention. Interventions focus on body structures and function and activity and participation, and both are explored. Known parameters for promoting bone, muscle, and brain plasticity and evidence supporting critical periods of growth during development are reviewed. Although parameters for dosing participation are not yet established, emerging evidence suggests that participation at high intensities has the potential for change. Participation interventions may provide an additional avenue to promote change through the life span. Recommendations for research and clinical practice are presented to stimulate discussions and innovations in research and practice.

Pediatric Rehabilitation Services for Children With Cerebral Palsy: What Can Existing Data Sources Tell Us?

Knowledge about associated service utilization patterns and positive outcomes in children with cerebral palsy (CP) of varying levels of severity is a national priority. Families, clinicians, program directors, and policy makers need this information for clinical decision-making and service planning. Existing data sources in the United States that contain information about children with CP, their health, function, well being, and utilization of health services may add to our existing knowledge. We provide a summary of fourteen national, state, and local sources' data: where the data come from, challenges and/or specific considerations when using or accessing information, and specific data elements included. Currently available sources of data can provide meaningful information for policy, practice, and program development. We propose questions for future inquiry and suggest elements that may be useful for when developing data sources specific to physical therapy and individuals with CP. A physical therapy specific registry is warranted.

Comparative Effectiveness Research and Children With Cerebral Palsy: Identifying a Conceptual Framework and Specifying Measures.

PURPOSE: A step toward advancing research about rehabilitation service associated with positive outcomes for children with cerebral palsy is consensus about a conceptual framework and measures. METHODS: A Delphi process was used to establish consensus among clinicians and researchers in North America. RESULTS: Directors of large pediatric rehabilitation centers, clinicians from large hospitals, and researchers with expertise in outcomes participated (N = 18). Andersen's model of health care utilization framed outcomes: consumer satisfaction, activity, participation, quality of life, and pain. Measures agreed upon included Participation and Environment Measure for Children and Youth, Measure of Processes of Care, PEDI-CAT, KIDSCREEN-10, PROMIS Pediatric Pain Interference Scale, Visual Analog Scale for pain intensity, PROMIS Global Health Short Form, Family Environment Scale, Family Support Scale, and functional classification levels for gross motor, manual ability, and communication. CONCLUSIONS: Universal forms for documenting service use are needed. Findings inform clinicians and researchers concerned with outcome assessment.

Technology for Children With Brain Injury and Motor Disability: Executive Summary From Research Summit IV.

Advances in technology show promise as tools to optimize functional mobility, independence, and participation in infants and children with motor disability due to brain injury. Although technologies are often used in adult rehabilitation, these have not been widely applied to rehabilitation of infants and children. In October 2015, the Academy of Pediatric Physical Therapy sponsored Research Summit IV, "Innovations in Technology for Children With Brain Insults: Maximizing Outcomes." The summit included pediatric physical therapist researchers, experts from other scientific fields, funding agencies, and consumers. Participants identified challenges in implementing technology in pediatric rehabilitation including accessibility, affordability, managing large data sets, and identifying relevant data elements. Participants identified 4 key areas for technology development: to determine (1) thresholds for learning, (2) appropriate transfer to independence, (3) optimal measurement of subtle changes, and (4) how to adapt to growth and changing abilities.

Addressing muscle performance impairments in cerebral palsy: Implications for upper extremity resistance training.

STUDY DESIGN: Case study and literature review. INTRODUCTION: Muscle performance consists of not only strength but also muscle power, rate of force development, and endurance. Therefore, resistance training programs should address not only the force-generating capacity of the muscle but also the ability to produce force quickly. PURPOSE: To discuss the National Strength and Conditioning Association's resistance training guidelines for youth as specifically related to optimal dosing for muscle strength versus muscle power. Dosing parameters of frequency, volume, intensity, duration, and velocity are discussed independently for strength and power. METHODS: We describe how resistance training principles can be applied to the upper extremity in CP through a case study. The case describes an individual with spastic CP, who has a severe motor disability and is non-ambulatory, but has been able to perform resistance training focused on speed, power, and strength. DISCUSSION: Recommendations to optimize the dosing of this individual's resistance training program are made.

Adults with cerebral palsy and functional decline: A cross-sectional analysis of patient-reported outcomes from a novel North American registry.

BACKGROUND: Adults with cerebral palsy (CP) have unique healthcare needs and risks, including high risk of functional decline. Understanding functional decline is an area of priority for CP research. OBJECTIVE: Describe factors associated with patient-reported changes in function among adults with CP living in the community. METHODS: Cross-sectional analysis of adult patient-reported outcomes collected by the CP Research Network (CPRN) Community Registry. RESULTS: Participants included 263 respondents (76% female (n = 200); mean age 42 years (SD 14); 95% White (n = 249); 92% non-Hispanic (n = 241)). Many reported functional changes, most commonly a decline in gross motor function since childhood (n = 158, 60%). Prevalence of gross motor decline varied significantly by Gross Motor Function Classification System (GMFCS) level (p < 0.001), but neither hand function decline (p = 0.196) nor communication decline (p = 0.994) differed by GMFCS. All types of decline increased with increasing age, with statistically significant differences between age groups (p < 0.001 gross motor; p = 0.003 hand function; p = 0.004 communication). Those with spastic CP (n = 178) most commonly reported gross motor functional decline (n = 108/178, 60.7%). However, the prevalence of gross motor decline did not significantly differ between those with spastic CP and those without spastic CP (p = 0.789). CONCLUSIONS: Many adults in the CPRN Community Registry reported functional decline, most commonly in gross motor function. Functional decline across domains increased with age. Further research into risk stratification and preventive and rehabilitative measures is needed to address functional decline across the lifespan.

Cerebral palsy research network community registry adult surveys on function & pain: Successes, challenges, and future directions.

NARRATIVE SUMMARY: The formation of a patient-reported outcomes registry to provide information about functional changes and pain among adults with cerebral palsy (CP) was identified as a priority to address the gap in knowledge and practice about aging and CP. The Cerebral Palsy Research Network collaborated with consumers, clinicians, and researchers to create an interactive internet platform, MyCP, to host a Community Registry. MyCP also provides educational programming, access to webinars and community forums, and fitness opportunities. The registry hosts surveys on function and pain for adults with CP, which provide cross-sectional and longitudinal data about these important issues. Surveys include previously validated measures with normative values that have been used with other populations and investigator developed questions. Enrollment in the registry is growing but needs to reflect the population of adults with CP, which limits generalizability. Future initiatives involve strategies to increase consumer engagement and enrollment.

Policy brief: adaptive cycling equipment for individuals with neurodevelopmental disabilities as durable medical equipment.

- Durable medical equipment (DME) policies require that the equipment be medically necessary; however, adaptive cycling equipment (bicycles and tricycles) are usually not deemed medically necessary. - Individuals with neurodevelopmental disabilities (NDD) are at high risk for secondary conditions, both physical and mental, that can be mitigated by increasing physical activity. - Significant financial costs are associated with the management of secondary conditions. - Adaptive cycling can provide improved physical health of individuals with NDD potentially reducing costs of comorbidities. - Expanding DME policies to include adaptive cycling equipment for qualifying individuals with NDD can increase access to equipment. - Regulations to ensure eligibility, proper fitting, prescription, and training can optimize health and wellbeing. - Programs for recycling or repurposing of equipment are warranted to optimize resources.

Adults with cerebral palsy and chronic pain experience: A cross-sectional analysis of patient-reported outcomes from a novel North American registry.

BACKGROUND: Chronic pain is common among adults with cerebral palsy (CP) and an area of priority for research and treatment. OBJECTIVE: Describe the pain experience and its functional and quality of life impact among adults with CP with chronic pain in the community. METHODS: Cross-sectional analysis of adult patient-reported outcomes collected by the Cerebral Palsy Research Network Community Registry. RESULTS: Among all participants in the Community Registry, n = 205 reported having chronic pain, and 73 % of those (n = 149) completed the Chronic Pain Survey Bundle (75 % female; mean age 43 years (SD 14 years); 94 % White; 91 % non-Hispanic). Back and weight-bearing joints of lower extremities were most frequently reported as painful. There were no differences in average pain severity scores between varying GMFCS levels (H = 6.25, p = 0.18) and age groups (H = 3.20, p = 0.36). Several nonpharmacologic interventions were most frequently reported as beneficial. Participants with moderate to severe average pain scores (5-10) had higher levels of pain interference (p < 0.01) and depression (p < 0.01), and lower levels of satisfaction with social roles (p < 0.01) and lower extremity function (p < 0.01). Pain interference was significantly positively correlated with depression, and negatively correlated with upper and lower extremity function and satisfaction with social roles. CONCLUSIONS: Chronic pain is experienced by adults with CP of varying ages and functional levels and is associated with several adverse quality of life and functional outcomes. Improved understanding of chronic pain in this population will facilitate the development and study of treatment interventions optimizing health, function, participation, and quality of life.

Weight status and gross motor skill in kindergarten children.

PURPOSE: Childhood obesity rates are increasing globally. Physical activity is one behavioral variable that influences weight status. Participation in physical activity requires basic gross motor proficiency in early childhood. The purpose of this study was to examine the relationship between gross motor skill level and weight status in a large national representative sample of kindergarten-aged children. METHODS: Body mass index percentile ranking was calculated for 4650 children from the Early Childhood Longitudinal Study-Birth Cohort. Children were classified into underweight, healthy, overweight, or obese categories according to the Centers for Disease Control and Prevention criteria. The Early Screening Inventory Revised was used to evaluate gross motor skill level. RESULTS: Children with obesity displayed lower gross motor skill levels compared with peers of healthy weight. Largest differences were seen in locomotor and balance skills. CONCLUSIONS: Clinicians should consider adjusting gross motor expectations for locomotor or stability tasks in young children with obesity.

Including Arts in Rehabilitation Enhances Outcomes in the Psychomotor, Cognitive, and Affective Domains: A Scoping Review.

OBJECTIVE: The purpose of this scoping review was to analyze the published literature regarding the use of art in the context of rehabilitation for consideration in physical therapy. METHODS: The CINAHL, PsycArticles, APA PsycInfo, Art Index, Music Index, Cochrane Reviews, and PubMed electronic databases were accessed. Inclusion and exclusion criteria were established and utilized to determine study eligibility. Study details were extracted from each article by researchers using a systematic format. Summation of journal type, participants, dosing and type of intervention, setting and interventionist, outcome domains, and study results were included. RESULTS: Out of 1452 studies, 76 were included for extraction. Of these studies, most had outcome measures aligned with the psychomotor and affective domains of learning (n = 66). Very few studies had outcome measures with psychomotor and cognitive domains (n = 2) or psychomotor, affective, and cognitive outcome measures (n = 8). Regarding the arts used, music, dance, or both were used in 77 instances. Fewer studies reported using creative arts therapy, singing, theater, writing, and rhythm (n = 17). Of the 76 studies analyzed, 74 reported a within-group treatment effect. CONCLUSION: The arts effectively enhance physical therapist practice; therefore, it is recommended that physical therapists continue to seek collaboration with art professionals and explore the use of arts in practice. IMPACT: Findings demonstrate that combining the arts with physical therapist practice amplifies not only psychomotor but affective and cognitive outcomes as well. The arts have applicability across broad populations (eg, chronic pain, neurologic dysfunction, respiratory conditions). This study supports that physical therapist education and practice should embrace the arts as a collaborative modality to promote enhanced psychomotor, affective, and cognitive outcomes.

Adults with cerebral palsy rank factors associated with quality of life and perceived impact of childhood surgery on adult outcomes.

BACKGROUND: Person-centered care concerns the values and perceptions of the patient in assessment of outcomes. Little is known about perceptions of adults with cerebral palsy (CP) concerning: the most important factors associated with quality of life, definitions of success, short- and long-term outcomes of childhood orthopedic care, and current needs for information surrounding childhood orthopedic care. METHODS: An online survey gathered information using structured and semi-structured questions. Descriptive statistics and content analysis summarized findings of structured questions and comments. RESULTS: A total of 71 adults with CP (44 women, median age range 30-39 years), with a variety of functional abilities, participated in the study. Priorities for a good life were clustered. There existed two groups: achievement orientation and relationship orientation. Good health and interpersonal relationships were priorities for both groups. Definitions of success included happiness, independence, meaningful relationships/activities, and mindfulness/lifelong-learning. Fifty-eight percent perceived a positive impact of childhood orthopedic care on current function. A positive perception was associated with being included in the decision making process (chi-square 25, p < .001). Suggestions to improve childhood orthopedic care included: more information about long-term outcomes, surgical timing, and alternatives to surgery, and improved service delivery models to prevent gaps in care across the lifespan. CONCLUSION: Ongoing conversations about how improvements from orthopedic surgery in childhood may not last through adolescence or adulthood are needed. The importance of impairment-based interventions should be contextualized within needs for health promotion and social engagement long-term. More research is needed on cost-benefit of childhood orthopedic surgery.Implications for RehabilitationPerceptions of being included in decisions about surgery as a child was associated with long term satisfaction.Consumer education is needed about how improvements gained in childhood may not persist through adolescence or into adulthood.Individual priorities for quality of life vary; and these priorities should be considered when weighing the cost benefit ratio of interventions.Clinicians should broaden the conversation to include how orthopedic surgery and rehabilitation afterwards could potentially impact health and well being in the future.

Musculoskeletal diagnoses, comorbidities, and physical and occupational therapy use among older adults with and without cerebral palsy.

BACKGROUND: Musculoskeletal (MSK) disorder in adults with cerebral palsy (CP) is higher than in the general population. Evidence lacks about physical therapy (PT) and occupational therapy (OT) service utilization among older adults (65> years) living with CP. OBJECTIVE: We compared the presence of comorbidities and patterns of PT and OT use among older adults with and without CP seeking care for MSK disorders. METHODS: A 20% national sample of Medicare claims data (2011-2014) identified community-living older adults with (n = 8796) and without CP (n = 5,613,384) with one or more ambulatory claims for MSK diagnoses. The sample matched one CP case to two non-CP cases per year on MSK diagnoses, age, sex, race, dual eligibility, and census region. Exposure variable was the presence/absence of a CP diagnosis. Outcomes were use of PT and OT services identified via CPT and revenue center codes, and the presence/absence of Elixhauser comorbidities. RESULTS: In older adults with MSK diagnoses, less than a third regularly utilized PT and/or OT services, and adults with CP utilized significantly less PT than adults without CP, and for some MSK diagnoses had fewer visits than their matched peers. Older adults with CP were at greater risk for secondary conditions that influence morbidity, mortality, and quality of life compared to their age-matched peers without CP. CONCLUSIONS: Older adults with CP and MSK diagnoses had a greater prevalence of numerous comorbidities and lower use of PT services relative to their non-CP peers.