Measurement of mid-upper arm circumference to screen for childhood malnutrition: General applicability and use in special populations.

Since the development of consensus-recommended indicators for pediatric malnutrition in 2014, screening and diagnosis of pediatric malnutrition have improved, but the indicators are not always used; malnutrition continues to be underdiagnosed in some community and healthcare settings. In particular, mid-upper arm circumference (MUAC) is underused as a screening indicator for pediatric malnutrition, despite its unique advantages and usefulness in several clinical situations. In December 2022, a scientific roundtable was held to bring together several experts in pediatric malnutrition.

Development and validation of a stakeholder-driven, self-contained electronic informed consent platform for trio-based genomic research studies.

Increasingly long and complex informed consents have yielded studies demonstrating comparatively low participant and with traditional face-to-face approaches. In parallel, interest in electronic consents for clinical and research genomics has steadily increased, yet limited data are available for trio-based genomic discovery studies. We describe the design, development, implementation, and validation of an electronic iConsent application for trio-based genomic research deployed to support genomic studies of cerebral palsy.

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.

Reduction of Very Rapid Emergency Transfers to the Pediatric Intensive Care Unit.

Introduction: Emergency transfers are associated with increased inpatient pediatric mortality. Therefore, interventions to improve system-level situational awareness were utilized to decrease a subset of emergency transfers that occurred within four hours of admission to an inpatient medical-surgical unit called very rapid emergency transfers (VRET). Specifically, we aimed to increase the days between VRET from non-ICU inpatient units from every 10 days to every 25 days over 1 year.

Feasibility and utility of in-home body weight support harness system use in young children treated for spinal muscular atrophy: A single-arm prospective cohort study.

Purpose: This single-arm prospective cohort study aimed to evaluate the feasibility and utility of in-home body weight support harness system (BWSS) use in children treated for spinal muscular atrophy (SMA).

Methods: Individuals with 2 or 3 copies of SMN2 who received pharmacotherapeutic treatment, had head control, and weight <50lbs were enrolled. Families were provided a BWSS and documented use.

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.

Continued safety and long-term effectiveness of onasemnogene abeparvovec in Ohio.

5q spinal muscular atrophy (SMA) is an autosomal recessive neurodegenerative disease caused by absence of the SMN1 gene with three FDA approved genetic therapies which significantly improve outcomes. The AAV9 mediated gene replacement therapy, onasemnogene abeparvovec, has the greatest potential for side effects. Here we report the safety and outcomes from 46 children treated with onasemnogene abeparvovec in the state of Ohio between December 2018 and January 2023.

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.

Examining the Role of Sublingual Atropine for the Treatment of Sialorrhea in Patients with Neurodevelopmental Disabilities: A Retrospective Review.

Sialorrhea is common in children with neurodevelopmental disabilities (NDD) and is reported in >40% of children with cerebral palsy (CP). It causes a range of complications, including significant respiratory morbidity. This single-center retrospective chart review aims to document sublingual atropine (SLA) utilization to guide further study in establishing its role in secretion management for children with NDD.

Newborn screening for Duchenne muscular dystrophy: A two-year pilot study.

Objective: Duchenne muscular dystrophy (DMD) is an X-linked disorder resulting in progressive muscle weakness and atrophy, cardiomyopathy, and in late stages, cardiorespiratory impairment, and death. As treatments for DMD have expanded, a DMD newborn screening (NBS) pilot study was conducted in New York State to evaluate the feasibility and benefit of NBS for DMD and to provide an early pre-symptomatic diagnosis.

Methods: At participating hospitals, newborns were recruited to the pilot study, and consent was obtained to screen the newborn for DMD.

Comparison of Gross Motor Outcomes Between Children With Cerebral Palsy From Appalachian and Non-Appalachian Counties.

Purpose: This study evaluated gross motor outcomes between children with cerebral palsy from non-Appalachian and Appalachian counties in the United States.

Methods: For this retrospective, matched-case controlled study, data were sourced from electronic medical record and compared between groups. Groups were matched by age and Gross Motor Function Classification System (GMFCS) level.

Providing a Primary Care Medical Home for Children and Youth With Cerebral Palsy.

Cerebral palsy (CP) is the most common motor disorder of childhood, with prevalence estimates ranging from 1.5 to 4 in 1000 live births. This clinical report seeks to provide primary care physicians with guidance to detect children with CP; collaborate with specialists in treating the patient; manage associated medical, developmental, and behavioral problems; and provide general medical care to their patients with CP.

Pancreatitis in the Complex Care Population: Presentation, Incidence, and Severity.

Objectives: To describe the incidence and presentation of pancreatitis in Children with Medical Complexity (CMC) while evaluating severity of disease and outlining risk factors.

Methods: This was a retrospective chart review between January 2010 and December 2019 of patients seen in the complex care clinic at Nationwide Children's Hospital (NCH) and Cincinnati Children's Hospital Medical Center (CCHMC). Data collected included sex, underlying diagnosis, family history of pancreatitis, type of pancreatitis, signs/symptoms, abdominal imaging, severity of attack, and presence of various risk factors associated with pancreatitis.

Epilepsy and proxy-reported health-related quality of life in children and young people with non-ambulatory cerebral palsy.

Aim: To assess the association between epilepsy characteristics and proxy-reported health-related quality of life (HRQoL) in children and young people with non-ambulatory cerebral palsy (CP) and seizures.

Method: This was a cross-sectional study of 164 children and young people (74 females, 90 males; mean age 10 years 6 months, range 2-21 years, SD 5 years 5 months). Caregivers completed the Child Health Index of Life with Disabilities (CPCHILD) in an outpatient setting.

Feeding tube use is associated with severe scoliosis in patients with cerebral palsy and limited ambulatory ability.

Purpose: Cerebral palsy (CP) is the most common motor disorder in childhood. Scoliosis is a common complication of CP that can reach clinically severe levels, but predictors for scoliosis in CP are not well understood. Some variables identified in the literature involve the severity of the brain injury and the presence of hip deformity.

"Hey Siri, Help Me Take Care of My Child": A Feasibility Study With Caregivers of Children With Special Healthcare Needs Using Voice Interaction and Automatic Speech Recognition in Remote Care Management.

Background: About 23% of households in the United States have at least one child who has special healthcare needs. As most care activities occur at home, there is often a disconnect and lack of communication between families, home care nurses, and healthcare providers. Digital health technologies may help bridge this gap.

A study of Reiki therapy on unpleasant symptoms in children with cerebral palsy.

Children with Cerebral Palsy (CP) commonly experience unpleasant symptoms such as pain, anger, and sadness. The purpose of this quasi-experimental study, guided by the Theory of Unpleasant Symptoms (TOUS), was to examine the practicality and impact of delivering Reiki Therapy (RT) in homes over an 8-week intervention phase to children with CP. Thirteen pediatric participants were recruited, ranging in age from 5 to 16 years.

Defining Persistent Total Parenteral Nutrition Use in Patients with Neurologic Impairment.

Patients with neurologic impairment (NI) experience gastrointestinal symptoms as one of three common problems associated with NI, including occasional persistent total parenteral nutrition (TPN) use. To describe the incidence of persistent TPN use in patients with NI. Retrospective chart review on patients 0-38 years old enrolled in the Complex Health Care Program from January 2011 to October 2015.

Evaluation of Pain in Adults With Childhood-Onset Disabilities and Communication Difficulties.

Adults with childhood-onset disabilities, particularly those with central nervous system impairment, commonly experience pain. Because many such individuals have difficulties in communication, caregivers and medical professionals must identify and interpret non-verbal behaviors as indicators of pain. This process is challenging and can lead to poor outcomes through delayed or incorrect diagnosis and treatment.

Lessons learned in the development of a nurse-led family centered approach to developing a holistic comprehensive clinic and integrative holistic care plan for children with cerebral palsy.

Clinical Problem: Children with cerebral palsy (CP) typically receive care from multiple specialty providers including Developmental Pediatrics, Orthopedics, Physical Medicine, Occupational Therapy, Physical Therapy, Speech Therapy, Clinical Social Work, Clinical Nutrition, Nursing and Orthotists, which often require many individual visits to the hospital annually. The potential for conflicting plans of care is increased by this fragmented approach, which may lead to duplication of services and increased healthcare costs.

Solution: To address the problem and alleviate burden for families, the Comprehensive Cerebral Palsy Program implemented a nurse-led comprehensive interdisciplinary team approach to provide optimal care coordination to patients and families, using an Integrative Holistic Care Plan (IHCP).

Validity and Reliability of the Neuromuscular Gross Motor Outcome.

Background: Approved treatments in spinal muscular atrophy (SMA) have resulted in unprecedented gains for many individuals. Use of available outcomes, typically developed for a specific type of SMA, do not cover the range of progression, often resulting in a battery of functional testing being completed at visits. Our objective was to validate the Neuromuscular Gross Motor Outcome (GRO) as a tool to quantify function in SMA across the span of abilities.

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.

Feasibility of a Voice-Enabled Medical Diary App (SpeakHealth) for Caregivers of Children With Special Health Care Needs and Health Care Providers: Mixed Methods Study.

Background: Children with special health care needs (CSHCN) require more than the usual care management and coordination efforts from caregivers and health care providers (HCPs). Health information and communication technologies can potentially facilitate these efforts to increase the quality of care received by CSHCN.

Objective: In this study, we aim to assess the feasibility of a voice-enabled medical diary app (SpeakHealth) by investigating its potential use among caregivers and HCPs.