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

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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

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.

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).

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.

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.

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).

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.

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.