Papers by Deborah Gaebler-Spira
Epilepsy & Behavior, Dec 1, 2022
medRxiv (Cold Spring Harbor Laboratory), Jan 28, 2022
Aim: The overarching aim of this research was to 1) Understand the mobility experiences, supporte... more Aim: 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. 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. Methods: A modified, three-round 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. Results: The advisory panel identified 13 unique topical categories focused on SMD selection and use, stratified by age group and stakeholder role. Questions or statements within each category were ranked, and top consensus and concordance statements were retained, reviewed, and refined for use in a co-developed focus group guide. Interpretation: A modified Delphi process was a useful tool for stakeholders in co-developing research priorities related to SMD use across the lifespan. Drawing on the lived expertise of stakeholders is important in facilitating improved research translation in the CP community.
Toxicon, Dec 1, 2018
0.075, and 0.15 ng/kg) and vehicle, respectively. Postinjection EMG activity was expressed as a p... more 0.075, and 0.15 ng/kg) and vehicle, respectively. Postinjection EMG activity was expressed as a percentage of the pretest EMG activity of each GMM. The median effective dose (ED 50 ), defined as the dose-inducing 50% inhibition of pretest EMG activity, was calculated. Results: Irrespective of the dose, rBoNT/E induced a significant decrease in EMG activity of the toxin-injected GMM (Table ). rBoNT/E had a fast onset of action, with a significant effect from the first day following administration, and a relatively short duration of action (Table ). None of the tested doses affected EMG activity of the contralateral GMM. No adverse clinical signs were reported throughout the 3-to 4-week postdosing period. Conclusions: Overall, single administration of the new rBoNT/E into the GMM muscle of monkeys at doses from 0.003 to 0.15 ng/kg was well tolerated. The pharmacodynamic profile of rBoNT/E was characterized by (1) a fast onset of effect (1 day following administration), (2) a dosedependent magnitude and duration of the effect, (3) complete inhibition with a 12-day duration at the highest tested dose of 0.15 ng/kg, and (4) an ED 50 of 0.012 ng/kg.
Archives of Physical Medicine and Rehabilitation, Sep 1, 2022
OBJECTIVE To describe the relationship between activity level and cardiovascular risk measures as... more 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. PARTICIPANTS 47 adults with cerebral palsy (CP) Interventions: Not applicable Main Outcome Measures: Gross Motor Functional Classification System (GMFCS) level was determined by validated self-report questionnaire. Activity (daily step count, walk time, sitting time, standing time, and transitional movements) over 6 days recorded using an activPAL. Weight, body mass index (BMI), and waist to hip ratio (WHR) were measured. Bivariate relationships between anthropomorphic and activity measures were assessed. RESULTS 38 participants completed all measurements. Nine were excluded due to incomplete activPAL data. The median age was 28.50 years [interquartile range 24.25,47.00], range 18-77 years. Participants' GMFCS levels were I:13%, II:16%, III:21%, IV:34%, and V:16%. Median steps/day for GMFCS I/II participants were 5258.3[3606.8, 6634.7], while median steps/day were 1681.3 [657.2, 2751.8] and 30.0 [6.8, 54.2] for GMFCS level III and IV/V participants, respectively. Significantly greater steps/day were found for GMFCS I/II or III participants compared to those GMFCS IV/V (p<0.001 and p=0.0074, respectively). 60.5% of the subjects had a BMI in the normal range, 10.5% were obese, 23.6% were overweight, and 5.3% were underweight. For subjects with GMFCS I/II, the Spearman's rank correlation coefficient for time standing and waist circumference was -0.73 (0.01). Subjects GMFCS III and GMFCS IV/V had respective correlations of -0.16 (0.71) and -0.01 (0.98). For subjects with GMFCS I/II, the Spearman's rank correlation coefficient for standing time and BMI was -0.55 (p= 0.08). For the GMFCS III and GMFCS IV/V groups the respective correlation was -0.19 (0.67) and 0.00 (1.00). CONCLUSIONS Subjects with GMFCS level I or II who engaged in more activity tended to have more favorable anthropometric profiles. Subjects GMFCS III, IV, or V did not have a similar trend. Our findings suggest factors beyond activity patterns affect anthropometrics to a greater degree in those with higher GMFCS levels.
Disability and Rehabilitation: Assistive Technology, Jul 15, 2023
Toxicon, 2021
0.075, and 0.15 ng/kg) and vehicle, respectively. Postinjection EMG activity was expressed as a p... more 0.075, and 0.15 ng/kg) and vehicle, respectively. Postinjection EMG activity was expressed as a percentage of the pretest EMG activity of each GMM. The median effective dose (ED 50 ), defined as the dose-inducing 50% inhibition of pretest EMG activity, was calculated. Results: Irrespective of the dose, rBoNT/E induced a significant decrease in EMG activity of the toxin-injected GMM (Table ). rBoNT/E had a fast onset of action, with a significant effect from the first day following administration, and a relatively short duration of action (Table ). None of the tested doses affected EMG activity of the contralateral GMM. No adverse clinical signs were reported throughout the 3-to 4-week postdosing period. Conclusions: Overall, single administration of the new rBoNT/E into the GMM muscle of monkeys at doses from 0.003 to 0.15 ng/kg was well tolerated. The pharmacodynamic profile of rBoNT/E was characterized by (1) a fast onset of effect (1 day following administration), (2) a dosedependent magnitude and duration of the effect, (3) complete inhibition with a 12-day duration at the highest tested dose of 0.15 ng/kg, and (4) an ED 50 of 0.012 ng/kg.
Frontiers in sports and active living, Mar 9, 2022
Children and adolescents with movement challenges have lower instances of physical activity and l... more 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). Participants included 13 athletes (average age 14.46 years, range 8-18 years, 4 females), who collectively completed 22 season blocks. Diagnoses included cerebral palsy (n = 10), arthrogryposis (n = 1), Dandy-Walker malformation (n = 1), and transverse myelitis (n = 1). In all settings, participants engaged in activities of social emotional learning, cardiovascular endurance, and muscle strengthening in a progressive manner. We found that each season format was feasible to administer with high attendance rates (76-97%) and positive qualitative feedback from athletes. In addition, promising average improvements in motor performance across a season (6 min frame running test, 170 m; timed up and go test, 8.44 s; five times sit to stand, 14.1 s; and Goal Attainment Scale, t = 65.01) were identified in the pilot data of this non-randomized cohort. Training in any of the proposed settings with an overall goal of completing a community race in a running frame is feasible and warrants further study.
Archives of Physical Medicine and Rehabilitation, Oct 1, 2018
Research Objectives: To evaluate the reliability and validity of the WHODAS II within people with... more Research Objectives: To evaluate the reliability and validity of the WHODAS II within people with different kinds of physical disabilities. Design: The quantitative methods were used. Setting: Hacettepe University, Faculty of Health Science, Department of Occupational Therapy. Participants: 275 people with disabilities aged 45.2AE10.5 years who referred by a physiatrist were recruited from the clinic of physiotherapy at Hacettepe University, Department of Occupational Therapy. Interventions: No intervention. Main Outcome Measure(s): The participants completed the WHO DAS II and in order to evaluate WHO DAS II's validity Community Integration Questionnaire (CIQ). Results: The alpha coefficient measuring the internal consistency of the questionnaire was 0.93, but the subscale's coefficient was rather inconsistent (i.e., ranging from 0.74-0.92) (p<0.05). The criterion-related validity between the WHO DAS II and the CIQ was moderate (i.e., coefficient of 0.60). Fit indices of the model supported the original factor structure ( 2 /dfZ1.79). Conclusions: The WHO DAS II is a valid and reliable measure to assess community participation in Turkish population. Author(s) Disclosures: No conflicts of interest.
American Journal of Physical Medicine & Rehabilitation, Mar 1, 1995
Clinical Pediatrics, May 24, 2022
This qualitative study evaluated barriers and facilitators to mobility in the homes of children w... more 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. The most inaccessible areas were stairs and bathrooms. Mobility and transfers became more difficult as children grew larger. Parents and children sustained injuries from performance of activities of daily living (ADLs). When available, durable medical equipment (DME) and home modifications improved home access and typically were funded using insurance and state Title V funds. However, parents reported that larger home modifications, such as bathroom modifications, were cost prohibitive. A pediatrician’s inquiry about mobility barriers may reveal crucial information about delivery of home care to CMC. CMC may be referred to rehabilitation specialists to address mobility needs.
Pm&r, Sep 1, 2010
Disclosures: D. J. Gaebler-Spira, None. Objective: To examine the psychometric properties of the ... more Disclosures: D. J. Gaebler-Spira, None. Objective: To examine the psychometric properties of the Care and Comfort Caregiver Questionnaire (CareQ), developed to measure the perceived effort of the caregiver for children with severe disabilities due to cerebral palsy (CP). Design: Instrument validation study. Participants: 100 caregivers (women 91%; mean age, 39.3Ϯ8.4 years) of children with CP (GMFCS) levels III (nϭ19), IV (nϭ39), V (nϭ42); mean age 9 years 0 months (SD 4 years 10 months); 57 boys (M:Fϭ1.3:1). Setting: Outpatient CP clinic in a large rehabilitation hospital. Main Outcome Measures: The CareQ was administered to caregivers of children with CP in GMFCS levels III, IV, V. The CareQ consists of 19 questions in 3 domains of Personal Care (9 items), Positioning/Transfer (3 items), and Comfort (7 items). Items were rated by the caregivers on ease or difficulty from 1 (easiest) to 5 (impossible) or frequency of each item from 0 (never) to 5 (always). WeeFIM ratings were obtained to evaluate validity of the CareQ. Demographic information on the caregivers and children were obtained. Internal consistency of the CareQ and its domains was measured with Cronbach's alpha Results: Mean CareQ total score was 42.6Ϯ14.5. Mean subscores for the Personal Care, Positioning/Transfer, and Comfort domains were 23.7Ϯ9.1, 8.4Ϯ3.0, and 10.5Ϯ7.6, respectively. Mean CareQ total score increased with severity of motor deficit (GMFCS level III 34.9Ϯ10.8, IV 42.8Ϯ13.8, V 46.0Ϯ15.5; Pϭ.02). Comfort domain scores rose with GMFCS levels (III 6.6Ϯ4.3, IV 9.6Ϯ7.0, V 8.8Ϯ3.5; Pϭ.005). Cronbach's alpha for the CareQ was 0.850, and was 0.933, 0.096, and 0.802 for the Personal Care, Positioning/Transfer, and Comfort domains. A weak negative correlation was observed between the CareQ and WeeFIM (rϭϪ.198, Pϭ.048).The total CareQ scores were positively correlated with child's age (rϭ.306, Pϭ.002) and body weight (rϭ.310, Pϭ.002). CareQ scores were not correlated with caregiver age. Conclusions: The CareQ appears to be a reliable measure of the perceived effort experienced by caregivers of children with CP. Factors that limited the internal consistency of Positioning/Transfer domain include the small number of items that only addressed wheelchair use and orthotics.
American Journal of Physical Medicine & Rehabilitation
Background Biomarkers have potential to identify early signs of joint disease. This study compare... more Background Biomarkers have potential to identify early signs of joint disease. This study compared joint pain and function in adolescents and young adults with CP compared to individuals without. Methods Cross-sectional study compared individuals with CP(n = 20), aged 13-30 with Gross Motor Function Classification System (GMFCS) I-III and age-matched individuals without CP(n = 20). Knee and hip joint pain measured using Numeric Pain Rating Scale (NPRS) and Knee injury and Osteoarthritis Outcome Score (KOOS) and Hip dysfunction and Osteoarthritis Outcome Score (HOOS) surveys. Objective strength and function were also measured. Biomarkers for tissue turnover (serum COMP, urinary CTX-II) and cartilage degradation (serum MMP-1, MMP-3) were measured in blood and urinary samples. Findings Individuals with CP had increased knee and hip joint pain, reduced leg strength, reduced walking and standing speeds, and ability to carry out activities of daily living(p < 0.005) compared to control...
JAMA Network Open
Early identification of cerebral palsy (CP) is important for early intervention, yet expert-based... more 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. 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,
Journal of Pediatric Rehabilitation Medicine
Peer review is an important process that produces the evidence-based medicine that guides the sta... more 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.
Uploads
Papers by Deborah Gaebler-Spira