Publications by authors named "Gaebler-Spira D"

Background: Those with neurological disorders like cerebral palsy (CP) may experience an altered impact of social determinates of health on child functioning and well-being. We investigated the relationship between relative social advantage and medical and functional outcomes in a large cohort of children, adolescents and young adults with CP (n = 1269, aged 2-84 years).

Methods: We extracted data from the Cerebral Palsy Research Registry and dichotomized a range of independent factors (income, ethnicity and race) into advantaged and disadvantaged/vulnerable and a range of medical and functional outcomes (gross motor, manual ability, behaviour, breathing, nutritional intake, hearing, seizures, language and vision) and computed odds ratios using logistic regression.

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Despite evidence of the effectiveness of early intervention (EI) programs, eligible infants often experience delays in initiation of services or fail to receive services entirely. Disparities have been documented, including lower enrollment rates for infants with public insurance. The objective of this pilot study was to evaluate the feasibility of initiating home physical therapy (PT) services promptly after neonatal or cardiac intensive care unit (NICU/CICU) discharge for infants with public insurance and to assess early motor outcomes for children who received study therapy compared with a standard of care group.

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Background: Cerebral palsy (CP) is considered the most prevalent developmental motor disorder in children. There is a need for training programs that enhance motor abilities and normalize function from an early age. Previous studies report improved motor outcomes in dance interventions for CP.

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Background: Many children with cerebral palsy (CP) show impairments in trunk posture control, one crucial factor contributing to impairments in gait and arm manipulation.

Research Question: The goal of this study was to test the feasibility of the cable-driven hippotherapy system on improving trunk posture control and walking function in children with CP.

Method: Ten children were recruited in this study with average age 6.

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Background: The Motor Optimality Score-Revised (MOS-R) is a clinical test of infant spontaneous movement at 3-5 months of age and has been associated with neurodevelopmental outcomes in infants with medical complexity. However the stability of the MOS-R tested at different developmental ages is not yet known.

Aim: To determine if the repeated scoring of the MOS-R remained consistent when tested at two developmental ages in young infants.

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Purpose: The aim of this study was to co-develop research priorities and identify meaningful research questions with a diverse group of stakeholders representing the CP community for implementation in subsequent research activities. The overarching aim of this research was to 1) Understand the mobility experiences, supported mobility device (SMD) use, and desired participation outcomes of people with cerebral palsy (CP) across the lifespan; and 2) Describe how perspectives of rehabilitation care and professional resources may influence mobility decision-making processes and outcomes.

Materials And Methods: A three-round modified Delphi consensus study was conducted with a stakeholder advisory panel consisting of three adults with CP, two parents of children with CP, and four SMD providers.

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Background: Biomarkers have potential to identify early signs of joint disease. This study compared joint pain and function in adolescents and young adults with cerebral palsy compared with individuals without.

Methods: This cross-sectional study compared individuals with cerebral palsy ( n = 20), aged 13-30 yrs with Gross Motor Function Classification System I-III and age-matched individuals without cerebral palsy ( n = 20).

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Children with cerebral palsy (CP) have sensorimotor impairments including weakness, spasticity, reduced motor control and sensory deficits. Proprioceptive dysfunction compounds the decreased motor control and mobility. The aims of this paper were to (1) examine proprioceptive deficit of lower extremities of children with CP; (2) study improvement in proprioception and clinical impairments through robotic ankle training (RAT).

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Objective: Developmental and epileptic encephalopathies (DEE) entail moderate to profound impairments in gross motor skills and mobility, which are poorly quantified with clinical outcomes assessments (COA) used in neuro-typical populations. We studied the motor domain of the Adaptive Behavior Assessment System-3 for ages 0-5 years (ABAS) used outside of its intended age range with a focus on raw scores.

Methods: In a cross-sectional survey, 117 parents of children with a variety of DEEs (ages 1-35 years, median = 9) completed the motor domain section of the ABAS.

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IncobotulinumtoxinA, a pure botulinumtoxinA formulation, is free of accessory proteins. This analysis provides pooled safety data from phase 3 trials of children/adolescents (2-17 years), investigating incobotulinumtoxinA for the treatment of spasticity associated with cerebral palsy (at doses ≤20 U/kg (max. 500 U) per injection cycle (IC) for ≤6 ICs; three trials) or sialorrhea associated with neurologic disorders (at total doses of 20-75 U per IC for ≤4 ICs; one trial) for ≤96 weeks.

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Purpose: This pooled analysis of data from three Phase 3 studies investigated the effects of incobotulinumtoxinA on spasticity-related pain (SRP) in children/adolescents with uni-/bilateral cerebral palsy (CP).

Methods: Children/adolescents (ambulant and non-ambulant) were evaluated for SRP on increasingly difficult activities/tasks 4 weeks after each of four incobotulinumtoxinA injection cycles (ICs) using the Questionnaire on Pain caused by Spasticity (QPS; six modules specific to lower limb [LL] or upper limb [UL] spasticity and respondent type [child/adolescent, interviewer, or parent/caregiver]). IncobotulinumtoxinA doses were personalized, with all doses pooled for analysis.

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Background: Cerebral palsy (CP) affects roughly 3 per 1000 births in the United States and is the most common pediatric developmental motor disability. Ankle foot orthoses (AFOs) are commonly prescribed to provide support and improve function for individuals with CP.

Objectives: The study objective was to evaluate the lived experiences of individuals with CP and their caregivers regarding AFO access, use, and priorities.

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Importance: Early identification of cerebral palsy (CP) is important for early intervention, yet expert-based assessments do not permit widespread use, and conventional machine learning alternatives lack validity.

Objective: To develop and assess the external validity of a novel deep learning-based method to predict CP based on videos of infants' spontaneous movements at 9 to 18 weeks' corrected age.

Design, Setting, And Participants: This prognostic study of a deep learning-based method to predict CP at a corrected age of 12 to 89 months involved 557 infants with a high risk of perinatal brain injury who were enrolled in previous studies conducted at 13 hospitals in Belgium, India, Norway, and the US between September 10, 2001, and October 25, 2018.

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Peer review is an important process that produces the evidence-based medicine that guides the standards by which we provide care. We all have a role to contribute to the advancement of our field through involvement in this process. Opportunities and guidance to the next generation of reviewers is essential to continue to move our field forward and is supported by the JPRM Residents and Fellows Program.

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This qualitative study evaluated barriers and facilitators to mobility in the homes of children with medical complexity (CMC) and the subsequent impact on CMC and their families. Eighteen caregivers of CMC were interviewed. Parents described that accessibility barriers impaired delivery of care at home and impacted the child's participation in family life.

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Aim: To understand the mobility experiences, supportive mobility device (SMD) use, and desired participation outcomes of individuals with cerebral palsy (CP) across the life span, and describe how perspectives of rehabilitation care and professional resources may influence mobility decision-making processes and outcomes.

Method: In the second phase of an overarching study, focus groups were conducted with 164 participants (68 individuals with CP; 32 females, 36 males; mean age 17y 8mo, SD 11y 11mo, range 3-68y), 74 caregivers (50 females, 24 males), and 22 healthcare providers (14 females, eight males) across four US cities. Sessions were audio-recorded, transcribed, and analysed using constant comparison.

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Children and adolescents with movement challenges have lower instances of physical activity and longer time spent in sedentary behaviors compared to children with typical development. The purpose of this study was to investigate the feasibility of a sport-based youth development running program modified for accessibility using a running frame and to evaluate initial evidence for its efficacy on endurance and functional strength. We completed four 8-week seasons (2-3 times per week) in a combination of 3 different formats by season: online remote (winter and spring), in person in a community park (winter, spring, and summer), and in person in an afterschool setting (autumn).

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Purpose: A large prospective database from three Phase 3 studies allowed the study of spasticity-related pain (SRP) in pediatric cerebral palsy (CP).

Methods: Baseline (pretreatment) SRP data occurring during different activities in children/adolescents (aged 2-17 years, ambulant/nonambulant) with uni-/bilateral spastic CP was obtained using the Questionnaire on Pain caused by Spasticity (QPS; six modules specific to spasticity level [lower limb (LL) or upper limb (UL)] and type of respondent [child/adolescent, interviewer, or parent/caregiver]).

Results: At baseline, 331 children/adolescents with LL- and 155 with UL-spasticity completed at least one key item of their modules; LL/UL QPS modules of parent/caregivers were at least partially completed (key items) by 841/444 parents/caregivers.

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Introduction: Adults with cerebral palsy (CP) face high morbidity from cardiovascular disease (CVD). Of concern, classic screening parameters are inconsistent in identifying CVD risk in this population. Dual-energy x-ray absorptiometry (DEXA), which provides direct measurements of fat mass (FM), may be an alternative screening method.

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Objective: To describe the relationship between activity level and cardiovascular risk measures as well as describe general activity patterns of adults with cerebral palsy.

Design: Cross-sectional.

Setting: Academic outpatient rehabilitation clinic.

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Purpose: The open-label phase 3 "Treatment with IncobotulinumtoxinA in Movement Open-Label" (TIMO) study investigated longer-term safety and efficacy of incobotulinumtoxin A in children/adolescents with cerebral palsy (CP).

Methods: Patients on standard treatment, with unilateral or bilateral lower limb (LL) or combined upper limb (UL)/LL spasticity received four incobotulinumtoxinA injection cycles (16 or 20 Units/kg bodyweight total [maximum 400 or 500 Units] per cycle depending on ambulatory status/clinical pattern treated), each followed by 12-16 weeks' observation. Treatment for pes equinus was mandatory; flexed knee or adducted thigh were options for unilateral treatment and/or ULs for unilateral/bilateral treatment.

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Background: This randomized phase 3 study with double-blind main period (MP) and open-label extension (OLEX; NCT02002884) assessed incobotulinumtoxinA safety and efficacy for pediatric upper-limb spasticity treatment in ambulant/nonambulant (Gross Motor Function Classification System [GMFCS] I-V) patients, with the option of combined upper- and lower-limb treatment.

Methods: Patients were aged two to 17 years with unilateral or bilateral spastic cerebral palsy (CP) and Ashworth Scale (AS) score ≥2 in treatment-selected clinical patterns. In the MP, patients were randomized (2:1:1) to incobotulinumtoxinA 8, 6, or 2 U/kg body weight (maximum 200, 150, 50 U/upper limb), with optional lower-limb injections in one of five topographical distributions (total body dose ≤16 to 20 U/kg, maximum 400 to 500 U, depending on body weight and GMFCS level).

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Aim: To determine whether functional impairments and autonomic symptoms are correlated in young people with developmental and epileptic encephalopathies (DEEs).

Method: Cross-sectional, online surveys (2018-2020) of parents recruited from family groups obtained information on several aspects of children's conditions including functional abilities (mobility, hand use, eating, and communication), 18 autonomic symptoms in six groups (cardiac, respiratory, sweating, temperature, gastrointestinal, and other), and parental stress. Bivariate and multivariable logistic regression analyses examined associations of dysautonomias with functional impairment, adjusted for type of DEE and age.

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