Multi-center improvement in screening for dystonia in young people with cerebral palsy.

Background And Objectives: Dystonia is a common, debilitating, and often treatment refractory motor symptom of cerebral palsy (CP), affecting 70-80% of this population based on research assessments. However, routine clinical evaluation for dystonia in CP has failed to match these expected numbers. Addressing this diagnostic gap is a medical imperative because the presence of dystonia rules in or out certain treatments for motor symptoms in CP.

Mental Health Diagnoses Risk Among Children and Young Adults With Cerebral Palsy, Chronic Conditions, or Typical Development.

Importance: Mental health (MH) issues in children with cerebral palsy (CP) are poorly understood compared with other pediatric populations.

Objective: To examine MH diagnosis code assignment among children and young adults with CP and compare with typically developing (TD) and chronic condition (CC) pediatric populations.

Design, Setting, And Participants: This case-control study used International Statistical Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM) codes to create a CP case set and CC and TD control sets using electronic health record data of children and young adults from a large tertiary care children's hospital in the midwestern United States between 2010 and 2022.

White matter characteristics in children with cerebral palsy prior to selective dorsal rhizotomy: a multicenter diffusion tensor imaging study.

Objective: The aims of this study were to 1) assess and quantify white matter (WM) microstructural characteristics derived from diffusion tensor imaging (DTI) in children with cerebral palsy (CP) prior to selective dorsal rhizotomy (SDR), and 2) investigate potential associations between WM diffusion properties and gross motor function and spasticity in children with spastic CP who underwent SDR.

Methods: This study is a multisite study based on DT images acquired prior to SDR as well as postoperative outcome data. DTI data collected from two sites were harmonized using the ComBat approach to minimize intersite scanner difference.

Spreading Standardized Documentation of Pediatric Occupational and Physical Therapy Dose: A Quality Improvement Initiative.

Importance: Clinicians and researchers can leverage clinical documentation of therapy services for quality improvement and research purposes. However, documentation is often institution specific and may not adequately capture the dose of therapy delivered, thus limiting collaboration.

Objective: To implement documentation of pediatric occupational and physical therapy dose from one institution to another institution.

Outpatient hospital utilization after single event multi-level surgery in children with cerebral palsy.

Purpose: This study aimed to examine outpatient hospital utilization (number of specialties seen and number of visits to each specialty) in the year after single event multi-level surgery (SEMLS) in children with cerebral palsy (CP), and to determine if utilization differs across the medical center in the year after compared to the year before SEMLS.

Methods: This retrospective cross-sectional study used electronic medical record data of outpatient hospital utilization in children with CP who underwent SEMLS.

Results: Thirty children with CP (Gross Motor Function Classification System Levels I-V, mean age of 9.

A multicenter initiative to reduce intrathecal baclofen pump surgical site infection: a Cerebral Palsy Research Network quality improvement project.

Objective: Intrathecal baclofen (ITB) therapy is an effective treatment for spasticity and dystonia in children with cerebral palsy (CP). However, ITB pump surgery is associated with one of the highest rates of surgical site infection (SSI) in medicine, leading to significant morbidity and expense. Surgical protocols have reduced the rate of SSI in children with other CNS implants, and single-center protocols have been effective in ITB surgery in pediatrics.

A big data approach to evaluate receipt of optimal care in childhood cerebral palsy.

Purpose: Through automated electronic health record (EHR) data extraction and analysis, this project systematically quantified actual care delivery for children with cerebral palsy (CP) and evaluated alignment with current evidence-based recommendations.

Methods: Utilizing EHR data for over 8000 children with CP, we developed an approach to define and quantify receipt of optimal care, and pursued proof-of-concept with two children with unilateral CP, Gross Motor Function Classification System (GMFCS) Level II. Optimal care was codified as a cluster of four components including physical medicine and rehabilitation (PMR) care, spasticity management, physical therapy (PT), and occupational therapy (OT).

Inpatient Physical Therapy After Orthopedic Lower Extremity Surgery in Children With Cerebral Palsy.

Purpose: To characterize and examine the variability in receipt of inpatient (IP) physical therapy after lower extremity (LE) orthopedic surgery for individuals with cerebral palsy (CP) across hospital-level (region, bed size) and individual characteristics (gender, age, race/ethnicity, insurance type, technology dependency, and surgical burden).

Methods: We retrospectively analyzed physical therapy billing data of children with CP who had LE orthopedic surgery from October 1, 2015, through September 30, 2017, from the Pediatric Health Information Services (PHIS) database.

Results: Seventy-five percent of individuals received IP physical therapy during the hospital stay.

Gross motor function prediction using natural language processing in cerebral palsy.

Aim: To predict ambulatory status and Gross Motor Function Classification System (GMFCS) levels in patients with cerebral palsy (CP) by applying natural language processing (NLP) to electronic health record (EHR) clinical notes.

Method: Individuals aged 8 to 26 years with a diagnosis of CP in the EHR between January 2009 and November 2020 (~12 years of data) were included in a cross-sectional retrospective cohort of 2483 patients. The cohort was divided into train-test and validation groups.

Infants With Congenital Muscular Torticollis: Demographic Factors, Clinical Characteristics, and Physical Therapy Episode of Care.

Purpose: To describe demographic factors, baseline characteristics, and physical therapy episodes in infants with congenital muscular torticollis (CMT), examine groups based on physical therapy completion, and identify implications for clinical practice.

Methods: Retrospective data were extracted from a single-site registry of 445 infants with CMT.

Results: Most infants were male (57%), Caucasian (63%), and firstborn (50%), with torticollis detected by 3 months old (89%) with a left (51%), mild (72%) CMT presentation.

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.

Describing the Delivery of Evidence-Based Physical Therapy Intervention to Individuals With Cerebral Palsy.

Purpose: To characterize by evidence grades and examine variation in type of physical therapy intervention delivered in routine clinical care in individuals with cerebral palsy (CP).

Methods: Retrospective data collection from the electronic record over 1 year at a tertiary care pediatric outpatient therapy division.

Results: Four hundred sixty-five individuals with CP received 28 344 interventions during 4335 treatment visits.

Electronic health record and patterns of care for children with cerebral palsy.

Aim: To characterize the patterns of care of children with cerebral palsy (CP) in a tertiary healthcare system.

Method: Electronic health record data from 2009 to 2019 were extracted for children with CP. Machine learning hierarchical clustering was used to identify clusters of care.

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.

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.

Documenting Physical Therapy Dose for Individuals With Cerebral Palsy: A Quality Improvement Initiative.

Purpose: To describe the quality improvement (QI) activities used to improve treatment dose documentation for individuals with cerebral palsy (CP) and to discuss insights gained from this project.

Methods: Global and smart aims were established and interventions were tested from January 2017 through February 2018 using Plan-Do-Study-Act cycles. Performance was tracked overtime using run and control charts.

Adapted Dance Improves Motor Abilities and Participation in Children With Down Syndrome: A Pilot Study.

Purpose: This pilot study measured effects of an adapted dance program on motor abilities and participation in children with Down syndrome (DS) and explored caregivers' qualitative feedback regarding its benefits.

Methods: Children with DS participated in 20 weekly 1-hour adapted dance sessions. The Canadian Occupational Performance Measure (COPM) and Gross Motor Function Measure (GMFM) Dimensions D and E were administered before and after the program.

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.

Setting a patient-centered research agenda for cerebral palsy: a participatory action research initiative.

Aim: To establish a patient-centered research agenda for cerebral palsy (CP).

Method: We engaged a large cross-section of the extended community of people living with CP and those providing healthcare to people with CP ('the community') in an educational series and collaborative survey platform to establish an initial list of prioritized research ideas. After online workshops, a facilitated Delphi process was used to select the 20 highest priorities.

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).