Anita Bagley

Shriners Hospitals for Children, Tampa, Florida, United States

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Publications (58)93.02 Total impact

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    ABSTRACT: The natural history of ambulatory function in individuals with cerebral palsy (CP) consists of deterioration over time. This is thought to be due, in part, to the relationship between strength and weight, which is postulated to become less favorable for ambulation with age.
    Journal of pediatric orthopedics 09/2014; · 1.23 Impact Factor
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    ABSTRACT: To determine the amount of variability in scores on activity and participation measures used to assess ambulatory individuals with cerebral palsy explained by strength, body composition, gait impairment and participant characteristics.
    Clinical rehabilitation. 07/2014;
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    ABSTRACT: AimThis prospective multicenter study assessed performance and changes over time, with and without surgical intervention, in the modified Timed Up and Go (mTUG) and One-Minute Walk tests (1MWT) in children with bilateral cerebral palsy (CP). Minimum clinically important differences (MCIDs) were established for these tools.Method Two hundred and nineteen participants with bilateral spastic CP (Gross Motor Function Classification System [GMFCS] levels I–III) were evaluated at baseline and 12 months follow-up. The non-surgical group (n=168; 54 females, 114 males; mean age 12y 11mo, [SD 2y 7mo], range 8y 1mo–19y) had no surgical interventions during the study. The surgical group (n=51; 19 females, 32 males; mean age 12y 10mo [SD 2y 8mo] range 8y 2mo–17y 5mo) underwent soft-tissue and/or bony procedures within 12 months from baseline. The mTUG and 1MWT were collected and MCIDs were established from the change scores of the non-surgical group.ResultsDependent walkers (GMFCS level III) required more time to complete the mTUG (p≤0.01) than independent walkers (GMFCS levels I and II). For the 1MWT, distance walked decreased with increasing impairment (p≤0.01). 1MWT and mTUG change scores were not significantly different at any GMFCS level for either the surgical or non-surgical groups (p≤0.01).InterpretationChildren with varying levels of function (GMFCS level) perform differently on the 1MWT and mTUG. The data and MCID values can assist clinicians in interpreting changes over time and in assessing interventions.
    Developmental Medicine & Child Neurology 05/2014; 56(5). · 2.68 Impact Factor
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    ABSTRACT: Objective To investigate whether body composition and lower extremity strength relate to oxygen cost of walking in children with cerebral palsy (CP), and to evaluate the relative contributions of these measures to explain variation in oxygen cost seen in this population. Methods A total of 116 children with spastic diplegic CP, Gross Motor Function Classification System levels I - III, aged 8-18 participated. Strength, body composition (body mass index (BMI) and percent body fat) and oxygen cost were recorded. Pearson correlations assessed relationships between variables of body composition and strength to oxygen cost. Forward stepwise linear regression analyzed variance explained by strength and body composition measures. Oxygen data were analyzed by weight status classifications using one-way analysis of variance with significance set at p < 0.05. Results Total strength (r = -0.27) and total extensor strength (r = -0.27) had fair inverse relationships with oxygen cost. Total extensor strength explained 7.5% (r2 = 0.075, Beta = -0.274, p < 0.01) of the variance in oxygen cost. Body composition did not explain significant variance in oxygen cost, however significant differences were found in oxygen consumption (p = 0.003) and walking velocity (p = 0.042) based on BMI weight classifications. Conclusions For ambulatory children with CP, oxygen cost during walking can be partially explained by total extensor strength and not body composition. However, those categorized as obese may adjust to a slower walking speed to keep their oxygen cost sustainable, which may further affect their ability to keep up with typically developing peers and possibly lead to greater fatigue.
    Gait & Posture. 01/2014;
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    ABSTRACT: Commercially available interactive video games are commonly used in rehabilitation to aide in physical recovery from a variety of conditions and injuries, including burns. Most video games were not originally designed for rehabilitation purposes and although some games have shown therapeutic potential in burn rehabilitation, the physical demands of more recently released video games, such as Microsoft Xbox Kinect™ (Kinect) and Sony PlayStation 3 Move™ (PS Move), have not been objectively evaluated. Video game technology is constantly evolving and demonstrating different immersive qualities and interactive demands that may or may not have therapeutic potential for patients recovering from burns. This study analyzed the upper extremity motion demands of Kinect and PS Move using three-dimensional motion analysis to determine their applicability in burn rehabilitation. Thirty normal children played each video game while real-time movement of their upper extremities was measured to determine maximal excursion and amount of elevation time. Maximal shoulder flexion, shoulder abduction and elbow flexion range of motion were significantly greater while playing Kinect than the PS Move (p≤0.01). Elevation time of the arms above 120° was also significantly longer with Kinect (p<0.05). The physical demands for shoulder and elbow range of motion while playing the Kinect, and to a lesser extent PS Move, are comparable to functional motion needed for daily tasks such as eating with a utensil and hair combing. Therefore, these more recently released commercially available video games show therapeutic potential in burn rehabilitation. Objectively quantifying the physical demands of video games commonly used in rehabilitation aides clinicians in the integration of them into practice and lays the framework for further research on their efficacy.
    Burns: journal of the International Society for Burn Injuries 11/2013; · 1.95 Impact Factor
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    ABSTRACT: The aim of this article was to determine item measurement properties of a set of items selected from the Gillette Functional Assessment Questionnaire (FAQ) and the Pediatric Outcome Data Collection Instrument (PODCI) using Rasch analysis, and to explore relationships between the FAQ/PODCI combined set of items, FAQ walking scale level, Gross Motor Function Classification System (GMFCS) levels, and the Gait Deviation Index on a common measurement scale. Rasch analysis was performed on data from a retrospective chart review of parent-reported FAQ and PODCI data from 485 individuals (273 males; 212 females; mean age 9 y 10 mo, SD 3 y 10 mo) who underwent first-time three-dimensional gait analysis. Of the 485 individuals, 289 had a diagnosis of cerebral palsy (104 GMFCS level I, 97 GMFCS level II, 69 GMFCS level III, and 19 GMFCS level IV). Rasch-based person abilities and item difficulties based on subgroups defined by the FAQ walking scale level, Gait Deviation Index, and the GMFCS level were compared. The FAQ/PODCI item set demonstrated necessary Rasch characteristics to support its use as a combined measurement scale. Item groupings at similar difficulty levels were consistent with the mean person abilities of subgroups based on FAQ walking scale level, Gait Deviation Index, and GMFCS level. Rasch-derived person ability scores from the FAQ/PODCI combined item set are consistent with clinical measures. Rasch analysis provides insights that may improve interpretation of the difficulty of motor functions for children with disabilities.
    Developmental Medicine & Child Neurology 03/2012; 54(5):443-50. · 2.68 Impact Factor
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    ABSTRACT: Elbow flexion contracture is a well-known complication of brachial plexus birth palsy that adversely affects upper-extremity function. The prevalence, risk factors, and rate of progression of elbow flexion contracture associated with brachial plexus birth palsy have not been established, and the effectiveness of nonoperative treatment involving nighttime splinting or serial casting has not been well studied. The medical records of 319 patients with brachial plexus birth palsy who had been seen at our institution between 1992 and 2009 were retrospectively reviewed to identify patients with an elbow flexion contracture (≥10°). The chi-square test for trend and the Kaplan-Meier estimator were used to evaluate risk factors for contracture, including age, sex, and the extent of brachial plexus involvement. Longitudinal models were used to estimate the rate of contracture progression and the effectiveness of nonoperative treatment. An elbow flexion contracture was present in 48% (152) of the patients with brachial plexus birth palsy. The median age of onset was 5.1 years (range, 0.25 to 14.8 years). The contracture was ≥30° in 36% (fifty-four) of these 152 patients and was accompanied by a documented radial head dislocation in 6% (nine). The prevalence of contracture increased with increasing age (p < 0.001) but was not significantly associated with sex or with the extent of brachial plexus involvement. The magnitude of the contracture increased by 4.4% per year before treatment (p < 0.01). The magnitude of the contracture decreased by 31% when casting was performed (p < 0.01) but thereafter increased again at the same rate of 4.4% per year. The magnitude of the contracture did not improve when splinting was performed but the rate of increase thereafter decreased to <0.1% per year (p = 0.04). The prevalence of elbow flexion contracture in children with brachial plexus birth palsy may be greater than clinicians perceive. The prevalence increased with patient age but was not significantly affected by sex or by the extent of brachial plexus involvement. Serial casting may initially improve severe contractures, whereas nighttime splinting may prevent further progression of milder contractures.
    The Journal of Bone and Joint Surgery 03/2012; 94(5):403-9. · 3.23 Impact Factor
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    ABSTRACT: Commercially available interactive video games (IVG) like the Nintendo Wii™ (NW) and PlayStation™II Eye Toy (PE) are increasingly used in the rehabilitation of patients with burn. Such games have gained popularity in burn rehabilitation because they encourage range of motion (ROM) while distracting from pain. However, IVGs were not originally designed for rehabilitation purposes but rather for entertainment and may lack specificity for achieving rehabilitative goals. Objectively evaluating the specific demands of IVGs in relation to common burn therapy goals will determine their true therapeutic benefit and guide their use in burn rehabilitation. Upper extremity (UE) motion of 24 normal children was measured using 3D motion analysis during play with the two types of IVGs most commonly described for use after burn: NW and PE. Data was analyzed using t-tests and One-way Analysis of Variance. Active range of motion for shoulder flexion and abduction during play with both PE and NW was within functional range, thus supporting the idea that IVGs offer activities with therapeutic potential to improve ROM. PE resulted in higher demands and longer duration of UE motion than NW, and therefore may be the preferred tool when UE ROM or muscular endurance are the goals of rehabilitation. When choosing a suitable IVG for application in rehabilitation, the user's impairment together with the therapeutic attributes of the IVG should be considered to optimize outcome.
    Burns: journal of the International Society for Burn Injuries 02/2012; 38(4):493-500. · 1.95 Impact Factor
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    ABSTRACT: Children with upper extremity burns frequently develop axillary contractures that can restrict movement. Surgical axillary contracture release is performed to restore function. The purpose of this study is to determine the long-term effects (up to 7 years) of surgical axillary contracture release on upper extremity motion during simulated activities of daily living using three-dimensional motion analysis. Motion analysis was conducted on 10 subjects (9 males and 1 female; 16 axillary contractures; mean age 10 ± 3 years at baseline; mean TBSA burn 40 ± 15%) before, 1 year after, and 2 to 7 years (mean 3 ± 2 years) after axillary contracture release with split-thickness skin graft surgery. Movements were analyzed during three functional tasks including high reach (reaching overhead for an object), hand to head (combing hair), and hand to back pocket (toileting). Two-tailed paired t-tests were used to compare presurgical and postsurgical scores. Surgical release of the axillary contracture increased shoulder mobility and decreased compensatory movements. Improvements were maintained at long-term follow-up. All shoulder movements with the exception of shoulder flexion during the high reach task and shoulder abduction during the hand to back task were not significantly different than normal values at long-term follow-up. Axillary contracture release surgery improves shoulder function in the short and long term. Motion analysis is a modality that may prove valuable in objectively quantifying changes in movement patterns immediately and in subsequent years after burn injury.
    Journal of burn care & research: official publication of the American Burn Association 11/2011; 33(2):228-34. · 1.54 Impact Factor
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    ABSTRACT: Purpose: Congenital thumb hypoplasia is a spectrum of clinical abnormalities ranging from a small digit to absence of the thumb resulting in abnormal opposition. Surgical repair requires understanding the abnormal anatomy and its effect on altered thumb opposition. Presently, there are limited clinical methods to assess thumb motion and, indirectly, the impact of abnormal opposition on thumb function. Therefore, the purpose of this study is develop and validate a kinematic model of the hand to measure thumb joint range of motion (ROM) and functional workspace of the thumb for future use in children with congenital thumb hypoplasia. Methods: A mathematic model of the hand describing the three-dimensional (3D) spatial relationship between the thumb and fingertips was developed using Motion Analysis Corporation and MATLAB software. The model included positioning twelve retroreflective markers on landmarks of the thumb, hand and fingertips to determine relative positions in 3D space. Marker positions were recorded using an eight-camera system. The mathematic model was validated by fabricating a rigid frame model of the hand. With markers attached to the frame, three tests were performed: (1) the joint angle calculation was validated by articulating the thumb through known angles; (2) the functional workspace calculation was validated by comparing intersection of two known volumes; (3) simulation of ROM tasks (full ROM and Kapandji test). Data Analysis: Custom MATLAB software calculated joint ROM and functional thumb workspace. For the functional workspace, a 3D triangular mesh shell was generated overlying marker data. All data points within the shell were interpolated and common data points between the thumb-tip and fingertips were determined (Figure). Data were compared using a two-tailed t-test. Results: There were no significant differences between goniometric and calculated joint angles for the CMC, MCP and IP joints (Table). The mean error for the functional workspace calculation was 3.1% and was not affected by volume size. The workspace calculated from the simulated Kapandji test was 72.2% smaller (p < 0.05) than the overall thumb ROM. Of note, the simulated Kapandji test measured decreased palmar abduction. Conclusion: This study presents an accurate kinematic model for measurement of the ROM and functional workspace of the thumb. Current clinical measurements of the thumb examine functionality but may not adequately assess deficiencies since thumb motion is not quantified. Future investigations will examine the functional ROM and workspace of the thumb in normal children and children with congenital thumb hypoplasia. Joint Angle () CMC Flex-Ext Abd-Add MCP Flex-Ext IP Flex-Ext 15 1.5 1.1 1.7 1.6 30 2.0 1.4 2.2 1.8 45 2.1 1.2 2.4 1.4 60 1.1 0.9 2.7 1.6 75 1.2 1.3 3.1 2.0 90 1.1 3.3 4.0 2.7 Table 1: Angle differences (calculated vs. goniometric) for thumb carpometacarpal (CMC), metacarpophalangeal (MCP), and interphalangeal (IP) joints.
    2011 American Academy of Pediatrics National Conference and Exhibition; 10/2011
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    ABSTRACT: To test a model of determinants of intensity of participation in leisure and recreational activities by youth with cerebral palsy (CP). Prospective cohort study. Children's hospitals (N=7). Youth with CP (N=205; age, 13-21y) and their parents. The sample included 107 (57.2%) males and 26 (12.7%) to 57 (27.8%) youth in each of the 5 levels of the Gross Motor Function Classification System (GMFCS). Not applicable. Youth completed the Children's Assessment of Participation and Enjoyment by means of an interview. Parents completed the Pediatric Outcomes Data Collection Instrument, Family Environment Scale, Coping Inventory, Measure of Processes of Care, a demographic questionnaire, and a services questionnaire. Structural equation modeling was used to test the model. Fit statistics indicate good model fit. The model explains 35% of the variance in intensity of participation. Path coefficients (P ≤ .05) indicate that higher physical ability, higher enjoyment, younger age, female sex, and higher family activity orientation are associated with higher intensity of participation. GMFCS level and caregiver education have indirect effects on intensity of participation. The path between services and intensity of participation was not significant. Participation by youth with CP is influenced by multiple factors. The influence of physical activity supports the importance of activity accommodations and assistive technology for youth who are not capable of improving physical ability. Knowledge of family activity orientation is important for identifying opportunities for participation. The unexplained variance suggests that the model should include other determinants, such as physical accessibility and availability of transportation and community leisure and recreational activities.
    Archives of physical medicine and rehabilitation 09/2011; 92(9):1468-76. · 2.18 Impact Factor
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    ABSTRACT: To determine dimensionality and item-level properties of the Gillette Functional Assessment Questionnaire (FAQ) 22-item skill set using factor and Rasch analyses. A retrospective review of parent-reported FAQ 22-item skill set data was conducted of 485 individuals (273 males, 212 females; mean age 9 y 10 mo, SD 3 y 10 mo), including 289 with cerebral palsy and 196 with a variety of other neuromusculoskeletal conditions with orthopedic impairments. Factor analyses to validate unidimensionality of the skill set and Rasch analyses to determine relative item difficulty, item and test level information, and content coverage of the item set were performed. Differential item functioning analysis of sub-groups based on sex, diagnosis grouping, and age was conducted. Precision of score estimates for the item set was analyzed. The FAQ 22-item skill set demonstrates unidimensional structure and good item fit statistics. No floor or ceiling effects were noted. Differential item functioning (DIF) based on age was noted for seven items, four items showed diagnosis group-related DIF, and one item sex-related DIF. Precision was adequate in the mid-range range of abilities. Based on this analysis, the FAQ 22-item skill set is a hierarchical set of interval scaled items suitable for measuring locomotor skill ability in children.
    Developmental Medicine & Child Neurology 11/2010; 53(3):250-5. · 2.68 Impact Factor
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    ABSTRACT: To test a model of child, family, and service determinants of intensity of participation in leisure and recreational activities by children with cerebral palsy (CP). Participants were 288 children with CP, age range 6 to 12 years (mean 9y 8mo, SD 2y), and their parents from seven children's hospitals. The sample comprised 166 (57.6%) males and 122 (42.4%) females, and between 40 (13.9%) and 74 (25.7%) children in each of the five levels of the Gross Motor Function Classification System. Children completed the Children's Assessment of Participation and Enjoyment by interview. Parents completed the Pediatric Outcomes Data Collection Instrument, Family Environment Scale, Coping Inventory, Measure of Processes of Care, and two questionnaires. Structural equation modeling was used to test the model. Fit statistics indicated a good model fit. The model explains 32% of the variance in intensity of participation. Path coefficients (p ≤ 0.05) indicate that higher gross motor function, higher enjoyment, more effective adaptive behavior, younger age, and higher family activity orientation are associated with higher intensity of participation. The path between services and participation was not significant. Intensity of participation of children with CP is influenced by multiple child and family determinants. Children's gross motor function and behavior in life situations are important for participation; knowledge of activities the child and family enjoy has implications for opportunities for participation. Professionals are encouraged to address priorities for leisure and recreation identified by children with CP and their families.
    Developmental Medicine & Child Neurology 10/2010; 53(2):142-9. · 2.68 Impact Factor
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    ABSTRACT: Children and adolescents highly value their ability to participate in relevant daily life and recreational activities. The Activities Scale for Kids-performance (ASKp) instrument measures the frequency of performance of 30 common childhood activities, and has been shown to be valid and reliable. A revised and expanded 38-item ASKp (ASKp38) version has been reported in recent literature and is currently used in clinical research. The aim of this paper is to assess the factor structure and item-level statistics of the ASKp38. Our study used factor analyses and Rasch analyses to determine the item-set dimensionality and to calculate item-level statistics respectively, for existing ASKp38 data from 200 children (104 males; 96 females; mean age 12y 7mo; SD 2y 8mo; range 6-20y) with physical disabilities. The children had a variety of physical impairments including cerebral palsy (n = 105; range 8-13 y), limb salvage (n = 18; range 11-20y), arthrogryposis (n = 13; 6-17y), and other, including individuals with spina bifida and spinal cord injury (n = 64; 8-19 y). A two-factor model, with components of activities of daily living and play, most optimally fit the data. Item-fit statistics based on this two-factor model demonstrated adequate fit and content coverage. The ASKp38 appears to consist of two factors, defined as (1) activities of daily living and (2) play, and may be used to measure the frequency of activity performance on two corresponding subscales.
    Developmental Medicine & Child Neurology 10/2010; 53(2):161-6. · 2.68 Impact Factor
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    ABSTRACT: Corticosteroids have recently been shown to reduce expected loss of muscle strength in patients with Duchenne muscular dystrophy and extend the time they can walk. We evaluated 43 boys with the condition to determine whether taking corticosteroids is associated with differences in gait pattern, gross motor skills, energy efficiency, and timed motor performance. We used the gait deviation index to quantify the degree of gait pathology and a single measure of gait quality. There were minimal differences in gait pattern, gross motor skills, energy efficiency, or timed motor performance in boys who took corticosteroids compared with those who did not. Clustering by gait deviation index, however, revealed subtle differences between groups in gait patterns, gross motor skills, and energy efficiency. We conclude that, in boys with Duchenne muscular dystrophy, gait pattern deviations are related to function, which can provide further insight into the understanding of disease progression and treatment options to enhance function and maintain ambulation.
    Journal of child neurology 09/2010; 25(9):1103-9. · 1.59 Impact Factor
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    ABSTRACT: In Duchenne muscular dystrophy, data directly linking changes in clinical outcome measures to patient-perceived well-being are lacking. This study evaluated the relationship between clinical outcome measures used in clinical trials of ambulatory Duchenne muscular dystrophy (Vignos functional grade, quantitative knee extension strength, timed functional performance measures, and gait velocity) and 2 health-related quality of life measures--the Pediatric Outcomes Data Collection Instrument and Pediatric Quality of Life Inventory-in 52 ambulatory Duchenne muscular dystrophy subjects and 36 controls. Those with the disease showed significant decrements in parent proxy-reported health-related quality of life measures versus controls across all domains. The Pediatric Outcomes Data Collection Instrument transfers/basic mobility and sports/ physical function and the Pediatric Quality of Life Inventory physical functioning domains had significant associations with age (and hence disease progression) and traditional clinical outcome measures employed in clinical trials of ambulatory boys with Duchenne muscular dystrophy. Selected domains of the Pediatric Outcomes Data Collection Instrument and generic Pediatric Quality of Life Inventory are potential patient-reported outcome measures for clinical trials in ambulatory individuals with the disease.
    Journal of child neurology 09/2010; 25(9):1130-44. · 1.59 Impact Factor
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    ABSTRACT: The concept of evidence-based medicine has gained broad support in the medical community, because clinical decisions based on information from rigorous scientific study are most likely to provide optimal care. Researchers attempt to answer clinical questions using either observational studies or randomized controlled trials (RCTs). Observational studies currently dominate the surgical literature but provide a level of evidence inferior to RCTs. RCTs are ethically grounded in clinical equipoise and may further reduce the potential for bias or other confounding factors by blinding. This article discusses the barriers to implementation of surgical RCTs.
    Orthopedic Clinics of North America 04/2010; 41(2):145-55. · 1.25 Impact Factor
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    Warren D Smith, Anita Bagley
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    ABSTRACT: Children with cerebral palsy may have difficulty walking and may fall frequently, resulting in a decrease in their participation in school and community activities. It is desirable to assess the effectiveness of mobility therapies for these children on their functioning during everyday living. Over 50 hours of tri-axial accelerometer and digital video recordings from 35 children with cerebral palsy and 51 typically-developing children were analyzed to develop algorithms for automatic real-time processing of the accelerometer signals to monitor a child's level of activity and to detect falls. The present fall-detection algorithm has 100% specificity and a sensitivity of 100% for falls involving trunk rotation. Sensitivities for drops to the knees and to the bottom are 72% and 78%, respectively. The activity and fall-detection algorithms were implemented in a miniature, battery-powered microcontroller-based activity/fall monitor that the child wears in a small fanny pack during everyday living. The monitor continuously logs 1-min. activity levels and the occurrence and characteristics of each fall for two-week recording sessions. Pre-therapy and post-therapy recordings from these monitors will be used to assess the efficacies of alternative treatments for gait abnormalities.
    Conference proceedings: ... Annual International Conference of the IEEE Engineering in Medicine and Biology Society. IEEE Engineering in Medicine and Biology Society. Conference 01/2010; 2010:5030-3.
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    ABSTRACT: Lower-extremity musculotendinous surgery is standard treatment for ambulatory children with deformities such as joint contractures and bony torsions resulting from cerebral palsy (CP). However, evidence of efficacy is limited to retrospective, uncontrolled studies with small sample sizes focusing on gait variables and clinical examination measures. The aim of this study was to prospectively examine whether lower-extremity musculotendinous surgery in ambulatory children with CP improves impairments and function measured by gait and clinical outcome tools beyond changes found in a concurrent matched control group. Seventy-five children with spastic CP (Gross Motor Function Classification System levels I to III, age 4 to 18 y) that underwent surgery to improve gait were individually matched on the basis of sex, Gross Motor Function Classification System level, and CP subtype to a nonsurgical cohort, minimizing differences in age and Gross Motor Function Measure Dimension E. At baseline and at least 12 months after baseline or surgery, participants completed gait analysis and Gross Motor Function Measure, and parents completed outcome questionnaires. Mean changes at follow-up were compared using analysis of covariance adjusted for baseline differences. Surgery ranged from single-level soft tissue release to multilevel bony and/or soft tissue procedures. At follow-up, after correcting for baseline differences, Gillette Gait Index, Pediatric Outcomes Data Collection Instrument Expectations, and Pediatric Quality of Life Inventory (PedsQL) Physical Functioning improved significantly for the surgical group compared with the nonsurgical group, which showed minimal change. On the basis of a matched concurrent data set, there was significant improvement in function after 1 year for a surgical group compared with a nonsurgical group as measured by the Gillette Gait Index, with few significant changes noted in outcome measures. Changes over 1 year are minimal in the nonsurgical group, supporting the possibility of ethically performing a randomized controlled trial using nonsurgical controls. Therapeutic level 2. Prospective comparative study.
    Journal of pediatric orthopedics 12/2009; 29(8):903-9. · 1.23 Impact Factor
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    ABSTRACT: The agreement between children's self-reports and parent proxy-reports has not been established for function and quality-of-life measures for children with musculoskeletal diagnoses, including unilateral congenital below-the-elbow deficiency. Factors influencing parent-child agreement in this population have yet to be determined. Ten hospitals administered the Pediatric Outcomes Data Collection Instrument (PODCI) and the Pediatric Quality of Life Inventory (PedsQL) prospectively to children and adolescents with a unilateral congenital below-the-elbow deficiency in order to assess their function and quality of life. Two-thirds of the subjects wore a prosthesis. These children's and adolescents' self-reports were compared with their parents' proxy-reports for the PODCI (n = 179) and the PedsQL (n = 364). Parents underestimated their children's/adolescents' self-report scores for the upper extremity physical function domain of the PODCI (p < 0.001) and overestimated the scores for comfort in the pain/comfort domain of the PODCI (p < 0.05). Parents also reported a lower social functioning score on the PedsQL than did the children and adolescents (p < 0.001). Greater agreement with regard to the social functioning domain of the PedsQL was observed between parents and children than between parents and adolescents (p < 0.05) and between parents and subjects who did not wear a prosthesis than between parents and subjects who wore a prosthesis (p < 0.01). Although the absolute differences are small, children with a unilateral congenital below-the-elbow deficiency report better upper-extremity function and quality of life than their parents perceive, but they may also be experiencing more pain. Factors influencing parent-child agreement on measures of quality of life include age and use of a prosthesis. Parents' reports of function may provide a helpful counterbalance to children's and adolescents' reports, but because quality of life is subjective by nature, the child's or adolescent's report is the gold standard. As a result of variability in agreement, PODCI and PedsQL parent reports cannot be considered true proxies for the self-reports of children or adolescents with unilateral congenital below-the-elbow deficiency or, possibly, of those with other musculoskeletal diagnoses.
    The Journal of Bone and Joint Surgery 12/2009; 91(12):2852-9. · 3.23 Impact Factor

Publication Stats

668 Citations
93.02 Total Impact Points

Institutions

  • 1999–2014
    • Shriners Hospitals for Children
      Tampa, Florida, United States
  • 2012
    • Gillette Children's Specialty Healthcare
      Saint Paul, Minnesota, United States
  • 2007–2012
    • University of California, Davis
      • • School of Medicine
      • • Department of Orthopaedic Surgery
      Davis, CA, United States
  • 2006–2010
    • California State University, Sacramento
      • Department of Electrical and Electronic Engineering
      Sacramento, CA, United States
  • 2004
    • Davis School District
      Davis, California, United States