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.

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.

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.

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.

Which Children Are Not Getting Their Needs for Therapy or Mobility Aids Met? Data From the 2009-2010 National Survey of Children With Special Health Care Needs.

BACKGROUND: Pediatric rehabilitation therapy services and mobility aids have an important role in the health of children with special health care needs, and the Affordable Care Act (ACA) may increase coverage for these needs. Identifying the prevalence of and factors associated with therapy and mobility aid needs and unmet needs prior to the full implementation of the ACA will be useful for future evaluation of its impact. OBJECTIVE: The purpose of this study was to identify the prevalence of and factors associated with caregiver perceived needs and unmet needs for therapy or mobility aids among children with special health care needs living in the United States. DESIGN: A cross-sectional, descriptive, multivariate analysis was conducted. METHODS: The 2009-2010 National Survey of Children With Special Health Care Needs was used to identify a nationally representative sample of children with special health care needs with needs for therapy (weighted n=2,603,605) or mobility aids (weighted n=437,971). Odds of having unmet needs associated with child and family characteristics were estimated. RESULTS: Nearly 1 in 5 children with therapy needs had unmet needs, and nearly 1 in 10 children with mobility aid needs had unmet needs. Unmet needs were most strongly associated with how frequently the condition affected function and being uninsured in the previous year. LIMITATIONS: Data were caregiver reported and not verified by clinical assessment. Survey data grouped physical therapy, occupational therapy, and speech therapy; analysis was not discipline specific. CONCLUSIONS: This evidence serves as a baseline about the future impact of the ACA. Pediatric rehabilitation professionals should be aware that children with special health care needs whose condition more frequently affects function and who have insurance discontinuity may need more support to meet therapy or mobility aid needs.

Health benefits of seated speed, resistance, and power training for an individual with spastic quadriplegic cerebral palsy: A case report.

Children with moderate to severe cerebral palsy are at risk for low bone mass for chronological age, which compounds risk in adulthood for progressive deformity and chronic pain. Physical activity and exercise can be a key component to optimizing bone health. In this case report we present a young adult male with non-ambulatory, spastic quadriplegia CP whom began a seated speed, resistance, and power training exercise program at age 14.5 years. Exercise program continued into adulthood as part of an active lifestyle. The individual had a history of failure to thrive, bowel and bladder incontinence, reduced bone mineral density (BMD) for age, and spinal deformity at the time exercise was initiated. Participation in the exercise program began once a week for 1.5-2 hours/session, and progressed to 3-5 times per week after two years. This exercise program is now a component of his habitual lifestyle. Over the 6 years he was followed, lumbar spine and total hip BMD Z-scores did not worsen, which may be viewed as a positive outcome given his level of gross motor impairment. Additionally, the individual reported less back pain, improved bowel and bladder control, increased energy level, and never sustained an exercise related injury. Findings from this case report suggest a regular program of seated speed, resistance, power training may promote overall well-being, are safe, and should be considered as a mechanism for optimizing bone health.

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.

A path model for evaluating dosing parameters for children with cerebral palsy.

Dosing of pediatric rehabilitation services for children with cerebral palsy (CP) has been identified as a national priority. Establishing dosing parameters for pediatric physical therapy interventions is critical for informing clinical decision making, health policy, and guidelines for reimbursement. The purpose of this perspective article is to describe a path model for evaluating dosing parameters of interventions for children with CP. The model is intended for dose-related and effectiveness studies of pediatric physical therapy interventions. The premise of the model is: Intervention type (focus on body structures, activity, or the environment) acts on a child first through the family, then through the dose (frequency, intensity, time), to yield structural and behavioral changes. As a result, these changes are linked to improvements in functional independence. Community factors affect dose as well as functional independence (performance and capacity), influencing the relationships between type of intervention and intervention responses. The constructs of family characteristics; child characteristics (eg, age, level of severity, comorbidities, readiness to change, preferences); plastic changes in bone, muscle, and brain; motor skill acquisition; and community access warrant consideration from researchers who are designing intervention studies. Multiple knowledge gaps are identified, and a framework is provided for conceptualizing dosing parameters for children with CP.