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.

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.

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.

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.

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.

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.

The cerebral palsy research network: Building a learning health network for cerebral palsy.

PURPOSE: The purpose of this study was to measure the growth of the Cerebral Palsy (CP) Research Network towards becoming a Learning Health Network in order to guide future development. METHODS: Thirteen CP Research Network leaders completed the Network Maturity Grid (NMG) which consists of six domains with eight to 10 components each. The six domains are Systems of Leadership, Governance and Management, Quality Improvement, Engagement and Community, Data and Analytics, and Research. Radar mapping was utilized to display mean scores on a 5-point ordinal scale (1 = not started to 5 = idealized state) across domains and for individual components within domains. Consensus was reached for top priorities for the next 3-5 years. RESULTS: Domain scores ranged from 2.4 in Quality Improvement to 3.2 in System of Leadership. The lowest scoring component was clinician clinical decision support and the highest was common purpose. The following priority areas of focus were agreed upon moving forward: development of leaders, financial sustainability, quality improvement education and training, patient reported data, data quality and validation, and primary data collection. CONCLUSION: Results from this project will be utilized for strategic planning to improve the network. Conducting regular self-assessments of the network with the NMG will be useful in achieving the network's ultimate goal to improve care and outcomes for individuals with CP.

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.

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.

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.

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.

Cerebral Palsy Research Network Clinical Registry: Methodology and Baseline Report.

OBJECTIVE: To apply practice-based evidence to clinical management of cerebral palsy (CP). The process of establishing purpose, structure, logistics, and elements of a multi-institutional registry and the baseline characteristics of initial enrollees are reported. DESIGN: A consensus-building process among consumers, clinicians, and researchers used a participatory action process. SETTING: Community, hospitals, and universities. PARTICIPANTS: More than 100 clinicians, researchers, and consumers and more than 1858 enrollees in the registry. MAIN OUTCOME MEASURES: Not applicable. RESULTS: Consensus was that the purpose of registry was to (1) quantify practice variation, (2) facilitate quality improvement (QI), and (3) perform comparative effectiveness research (CER). Collecting data during routine clinical care using the electronic medical record was determined to be a sustainable plan for data acquisition and management. Clinicians from multiple disciplines defined salient characteristics of individuals and interventions for the registry elements. The registry was central to the clinical research network, and a leadership structure was created. A leading electronic health record platform adopted the registry elements. Twenty-four sites have initiated the data collection process and agreed to export data to the registry. Currently 12 are collecting data. Number of enrollees and characteristics were similar to other population registers. CONCLUSIONS: This is the first multi-institutional CP registry that contains the patient and treatment characteristics needed for QI and CER. The Cerebral Palsy Research Network registry elements are implemented in a versatile electronic platform and minimize burden to clinicians. The resultant registry is available for any institution to participate and is growing rapidly.

Registry-based Research in Cerebral Palsy: The Cerebral Palsy Research Network.

Registries are a powerful tool for clinical research. Clinical registries for cerebral palsy can aid in comparative effectiveness research, especially using the practice-based evidence model. The Cerebral Palsy Research Network (CPRN) was initiated in 2014 as a patient-centered, multidisciplinary registry. The leadership group initiated a 4-stage participatory action research process: listen, reflect, plan/analyze, and take action. CPRN also joined with CP NOW, an advocacy group, to create a research agenda for cerebral palsy. With more than 20 centers and growing, CPRN hopes to generate evidence for developing best practices and measure their implementation and impact for individuals with cerebral palsy throughout North America.

Shared meanings of success, happiness, and health among adults with cerebral palsy and physiotherapists: implications for practice and research.

PURPOSE: To describe shared meanings of success, happiness, and health of adults with cerebral palsy and physiotherapists. MATERIALS AND METHODS: Ethnography employed open ended/semi-structured interviews and structured questionnaires (Satisfaction with Life Scale, Beck Depression Inventory-II®, Oxford Happiness Questionnaire, Life Habits Questionnaire, Medical Outcomes Study-Social Support Survey, and PROMIS® Pain Interference Scale). Content analysis of qualitative data and principal components analysis of questionnaire responses identified shared meanings. RESULTS: Fourteen adults with cerebral palsy and 15 physiotherapists (median age 46) had similar levels of education. For both groups, social achievements, personal goals, employment, and supporting a family defined success. Adults with cerebral palsy more frequently identified tenacity and persistence as important for success. Both groups described happiness as spending time with loved ones, recreational activities, and having purpose in life. Adults with cerebral palsy identified the importance of self-acceptance for happiness. For both, health included self-care of mind/spirit, cardiovascular and musculoskeletal wellness, and physical fitness (the ability to perform physical tasks). Analysis of questionnaire responses identified shared meanings (eigenvalue 41, 95% explained variance). CONCLUSIONS: Adults with cerebral palsy and physiotherapists share similar experiences, behaviors, and feelings about success, happiness, and health. This knowledge may improve communication, enhance evidence-based practice, and foster services to support wellbeing. Implications for rehabilitation Cerebral palsy is a life-long condition, but we know little about social and physical outcomes for adults with cerebral palsy. Lack of understanding about meanings of success, happiness, and health may be a barrier for consumers accessing and for providers delivering evidence-based services. Physiotherapists and adults with cerebral palsy share similar meanings (feelings, experiences, beliefs, behaviors) of success, happiness, and health- or wellbeing. Knowledge of this common ground may result in improved communication between providers and consumers, and foster more relevant and meaningful services to support the wellbeing of adults with cerebral palsy.

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.

Using the International Classification of Functioning, Disability, and Health Model to Gain Perspective of the Benefits of Yoga in Stroke, Multiple Sclerosis, and Children to Inform Practice for Children with Cerebral Palsy: A Meta-Analysis.

OBJECTIVE: Research pertaining to yoga and children with cerebral palsy (CP) is negligible. The primary purpose of this study was to determine the domains of the International Classification of Functioning, Disability, and Health (ICF) model and levels of evidence for yoga and adults with stroke and multiple sclerosis (MS), and children. A secondary purpose was to decide whether any inferences could be made for children with CP. DESIGN: This study included a meta-analysis. INTERVENTIONS: A systematic review was performed of yoga and said populations. Outcome measures were categorized according to the ICF model domains of body structures and function, activity, and quality of life. Effect sizes (ESs) were calculated by using Cohen's d. Since there were few commonalities among outcome measures and reporting of outcomes within and among diagnostic groups, direct comparisons of ESs were difficult. Hence, we chose to evaluate the impact of yoga as compared with the control group or other physical exercise by using a General Linear Mixed Model. RESULTS: There were 5 yoga studies with stroke, 15 with MS, and 12 with children. Studies with children used outcomes related to body structure and function, whereas those with stroke and MS used outcomes across all three domains of the ICF. ESs varied from negligible to medium for stroke, from negligible to large for MS and children. CONCLUSIONS: The findings of this meta-analysis indicate that yoga is no better or worse than other exercise modalities as a treatment intervention for adults with stroke and MS, and children. Group yoga classes are typically social environments that can contribute to increased physical progress and feelings that contribute to quality of life, which may benefit individuals with CP. More research on yoga and particularly in children and adults with CP would yield valuable information for creating effective and safe yoga programs with a rich array of benefits.

Using the electronic medical record to study the association of child and environmental characteristics on the type of physical therapy services delivered to individuals with cerebral palsy.

The purpose of this study was to characterize the intervention type delivered to individuals with cerebral palsy (CP) in a pediatric outpatient medical setting and to identify factors associated with the total amount of service within each type. Four hundred and twenty-five individuals with CP (1-33 years) Gross Motor Function Classification System (GMFCS): Level I (n = 152); II (n = 63); III (n = 55); IV (n = 80); and V (n = 75). Billing code data was extracted retrospectively from 2008 medical records and categorized to reflect four types: body structures and function (BSF), activity (ACT), environment (ENV), and examination (EXAM). Age at first visit, type of insurance at first visit and GMFCS level was also collected. The majority (47%) of the PT delivered was categorized as activity based units, 25% as body structure and function, 21% as environment, and 7% as examination. Significant differences were found in: total BSF therapy units among GMFCS (p = 0.008) and insurance type (p < 0.001), ACT units among GMFCS (p < 0.001), age groups (p < 0.001), and insurance type (p = 0.008), and ENV units among GMFCS (p = 0.04). The amount of variability (R2) explained by the model for each category BSF, ACT, and ENV was 0.09 (p < 0.0001), 0.15 (p < 0.0001) and 0.02 (p = 0.04), respectively. Variations in amount of services received among types of intervention are associated with child and environmental characteristics. Low R2 values indicate the need to collect information on other factors that influence service delivery. Data that are standardized and reliably collected should be validated and compared across institutions to support larger studies of service delivery patterns.

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.