Creating an autoencoder single summary metric to assess gait quality to compare surgical outcomes in children with cerebral palsy: The Shriners Gait Index (SGI).

Gait for individuals with movement disorders varies widely and the variability makes it difficult to assess outcomes of surgical and therapeutic interventions. Although specific joints can be assessed by fewer individual measures, gait depends on multiple parameters making an overall assessment metric difficult to determine. A holistic, summary measure can permit a standard comparison of progress throughout treatments and interventions, and permit more straightforward comparison across varied subjects. We propose a single summary metric (the Shriners Gait Index (SGI)) to represent the quality of gait using a deep learning autoencoder model, which helps to capture the nonlinear statistical relationships among a number of disparate gait metrics. We utilized gait data of 412 individuals under the age of 18 collected from the Motion Analysis Center (MAC) at the Shriners Children's - Chicago. The gait data includes a total of 114 features: temporo-spatial parameters (7), lower extremity kinematics (64), and lower extremity kinetics (43) which were min-max normalized. The developed SGI score captured more than 89% variance of all 144 features using subject-wise cross-validation. Such summary metrics holistically quantify an individual's gait which can then be used to assess the impact of therapeutic interventions. The machine learning approach utilized can be leveraged to create such metrics in a variety of contexts depending on the data available. We also utilized the SGI to compare overall changes to gait after surgery with the goal of improving mobility for individuals with gait disabilities such as Cerebral Palsy.

HipScreen mobile app for the measurement of hip migration percentage in children with cerebral palsy: Accuracy, reliability, and discriminatory ability.

AIM: To assess the accuracy, reliability, and discriminatory ability of a mobile app for measurement of migration percentage in hip surveillance radiographs of children with cerebral palsy (CP). METHOD: The free mobile app HipScreen (www.hipscreen.org) was utilized by a diverse group of users to measure the migration percentage of 40 hips at two time points after completing an online tutorial and competency test. The mean absolute error (MAE) was calculated against the reference standard obtained on a radiology workstation. Statistical analyses included linear regression, intraclass correlation coefficient (ICC), and area under receiver-operating characteristic curve (AUC). RESULTS: Thirty-seven users completed the study, with 30 having a healthcare professional background, but only 15 with x-ray interpretation expertise. The overall MAE of migration percentage measurement using the HipScreen app was 5.72% (95% confidence interval [CI]: 5.38-6.06), with good reliability between time points (ICC = 0.83). With a migration percentage less than 30% considered as a positive case, the HipScreen app had a sensitivity of 94% (95% CI: 87-97), specificity of 66% (95% CI: 61-77), and an AUC of 0.92 (95% CI: 0.88-0.96). INTERPRETATION: Users from a broad range of backgrounds can utilize the HipScreen app to measure hip surveillance radiographs with clinically acceptable accuracy, reliability, and discriminatory ability. WHAT THIS PAPER ADDS: The HipScreen app can accurately and reliably measure migration percentage. As a screening tool, HipScreen has excellent sensitivity and discriminatory ability. A broad range of HipScreen users achieve clinically acceptable performance.

Surgical Management of Severe Equinus Deformity in Ambulatory Children With Cerebral Palsy.

BACKGROUND: Tendo Achilles lengthening (TAL) for the management of equinus contractures in ambulatory children with cerebral palsy (CP) is generally not recommended due to concerns of over-lengthening, resulting in weakness and plantar flexor insufficiency. However, in some cases, surgical correction of severe equinus deformities can only be achieved by TAL. The goal of this study is to assess the outcomes following TAL in these cases. METHODS: A retrospective cohort study of children with CP with severe equinus contractures (ankle dorsiflexion with the knee extended of -20 degrees or worse) who underwent TAL as part of a single event multilevel surgery, with preoperative and postoperative gait analysis studies. Continuous data were analyzed by paired t test, and categorical data by McNemar Test. RESULTS: There were 60 subjects: 42 unilateral, 18 bilateral CP; 41 GMFCS II, 17 GMFCS I; mean age at surgery was 10.6 years, mean follow-up was 1.3 years. Ankle dorsiflexion with the knee extended improved from -28 to 5 degrees (P<0.001). The ankle Gait Variable Score improved from 34.4 to 8.6 (P<0.001). The ankle moment in terminal stance improved from 0.43 to 0.97 Nm/kg (P<0.001). Significant improvements (P<0.001) were seen in radiographic measures of foot alignment following surgery. There were few significant differences in the outcome parameters between subjects with unilateral versus bilateral CP (eg, only the bilateral group showed improved but persistent increased knee flexion in mid-stance). CONCLUSIONS: The outcomes following TAL for the management of severe equinus deformity in ambulatory children with CP were favorable 1 year after surgery, with significant improvements in all domains measured. SIGNIFICANCE: This study does not advocate for the widespread use of TAL to correct equinus deformity in children with CP. However, it does show that good short-term outcomes following TAL are possible in properly selected subjects with severe contractures when the dosing of the surgery is optimal (correction of contracture to between 0 and 5 degrees of dorsiflexion with the knee extended) and the procedure is performed in the setting of single event multilevel surgery with subsequent proper orthotic management and rehabilitation.

Adults with cerebral palsy rank factors associated with quality of life and perceived impact of childhood surgery on adult outcomes.

BACKGROUND: Person-centered care concerns the values and perceptions of the patient in assessment of outcomes. Little is known about perceptions of adults with cerebral palsy (CP) concerning: the most important factors associated with quality of life, definitions of success, short- and long-term outcomes of childhood orthopedic care, and current needs for information surrounding childhood orthopedic care. METHODS: An online survey gathered information using structured and semi-structured questions. Descriptive statistics and content analysis summarized findings of structured questions and comments. RESULTS: A total of 71 adults with CP (44 women, median age range 30-39 years), with a variety of functional abilities, participated in the study. Priorities for a good life were clustered. There existed two groups: achievement orientation and relationship orientation. Good health and interpersonal relationships were priorities for both groups. Definitions of success included happiness, independence, meaningful relationships/activities, and mindfulness/lifelong-learning. Fifty-eight percent perceived a positive impact of childhood orthopedic care on current function. A positive perception was associated with being included in the decision making process (chi-square 25, p < .001). Suggestions to improve childhood orthopedic care included: more information about long-term outcomes, surgical timing, and alternatives to surgery, and improved service delivery models to prevent gaps in care across the lifespan. CONCLUSION: Ongoing conversations about how improvements from orthopedic surgery in childhood may not last through adolescence or adulthood are needed. The importance of impairment-based interventions should be contextualized within needs for health promotion and social engagement long-term. More research is needed on cost-benefit of childhood orthopedic surgery.Implications for RehabilitationPerceptions of being included in decisions about surgery as a child was associated with long term satisfaction.Consumer education is needed about how improvements gained in childhood may not persist through adolescence or into adulthood.Individual priorities for quality of life vary; and these priorities should be considered when weighing the cost benefit ratio of interventions.Clinicians should broaden the conversation to include how orthopedic surgery and rehabilitation afterwards could potentially impact health and well being in the future.

Proximal Femoral Deformity Following Threaded Prophylactic Fixation for Slipped Capital Femoral Epiphysis: Risk Stratification Using the Modified Oxford Score.

BACKGROUND: This study assesses the effect of skeletal maturity on the development of iatrogenic proximal femoral deformity following threaded prophylactic screw fixation in patients presenting with unilateral slipped capital femoral epiphysis (SCFE). METHODS: Children who underwent threaded screw prophylaxis of the uninvolved hip (Group P) and those who were observed with no prophylaxis (Group N) on presentation with unilateral SCFE were compared. Skeletal maturity was assessed with the Modified Oxford Score (MOS). Proximal femoral morphology was characterized by femoral neck length, femoral neck width, neck shaft angle, and trochanteric femoral head overlap percentage (TFHOP). Femoral head deformity at final follow-up was characterized as spherical (Type 1), mildly aspherical (Type 2), or ovoid (Type 3). Analysis of variance and t test were used to compare the groups. RESULTS: Thirty-eight patients in Group P and 17 patients in Group N met inclusion criteria. The average follow-up was 2.6 years. Group P was younger than Group N by an average of 9.6 months (P=0.04), but the MOS for skeletal maturity was not different between groups (P=0.15). Group P had significantly diminished neck length (P=0.008) and significantly increased relative trochanteric overgrowth as evidenced by increased trochanteric femoral head overlap percentage (P<0.001), but there was no difference between groups in neck shaft angle and neck width. No patient in Group N developed femoral head deformity (all Type 1). In Group P, 14 patients (37%) developed Types 2 and 3 deformity. In patients with MOS 16 in Group P, 60% (3/5) developed Type 2 deformity and 40% (2/5) developed Type 3 deformity. In patients with MOS 17 in Group P, 45% (5/11) had Type 2 deformity. CONCLUSIONS: Skeletally immature patients with an MOS of 16 and 17 are at high risk for developing the triad of relative trochanteric overgrowth, coxa breva, and femoral head asphericity with prophylactic threaded screw fixation for SCFE. When prophylactic surgery is indicated, consideration should be given to growth friendly fixation strategies to avoid iatrogenic proximal femoral deformity. LEVELS OF EVIDENCE: Level III-therapeutic retrospective comparative study.

Three-dimensional functional workspace of thumb prehension.

BACKGROUND: Clinical assessment of thumb motion is challenging, due to the complex anatomy and motion of the thumb. It is especially difficult to measure hand movement during activity, and to measure the effects of surgery that changes the morphology of the thumb. A three-dimensional model of the hand may enable clinicians to better assess prehension and thumb motion at baseline, and following surgical intervention. METHODS: A kinematic model of the hand was developed to measure thumb and finger position during functional tasks, enabling the calculation of the volume of space in which prehension could occur. This method was validated by application to a mechanical model of the hand, and then applied to ten adult participants, using three-dimensional motion analysis with a marker array developed for the purpose of this study. FINDINGS: This method can be used to accurately measure three-dimensional thumb joint range of motion (RoM) and predicted functional workspace during functional activities. The thumb carpometacarpal joint was predominantly responsible for thumb position during functional tasks. Predicted functional workspace is proportional to hand morphometric measurements. INTERPRETATION: A kinematic model of the hand measures thumb RoM and predicts functional workspace during functional activities.

Quantitative Assessment of Muscle Strength Following "Slow" Surgical Lengthening of the Medial Hamstring Muscles in Children With Cerebral Palsy.

BACKGROUND: Classic teaching for surgical lengthening of muscle contractures in children with cerebral palsy (CP) has emphasized complete correction of the deformity acutely, with immobilization of the targeted muscles in the fully corrected position. Clinical experience has led to the impression that the muscles are invariably weakened by this approach. We have developed an alternative technique for correction of contractures called slow surgical lengthening (SSL). The goal of the study was to determine the physical examination, kinematic, and muscle strength outcomes following SSL of the medial hamstring muscles in children with CP. METHODS: The study group included 41 children with CP who underwent SSL of the medial hamstring muscles as part of a comprehensive single-event multilevel surgery, who had preoperative and 1-year postoperative evaluations in our Motion Analysis Center, which included quantitative assessment of isometric and isokinetic muscle strength. RESULTS: All subjects were Gross Motor Function Classification System I and II. Mean age at the time of surgery was 10.8 years. The mean popliteal angle improved by 16.2 degrees (P<0.001) following SSL of the medial hamstrings. Sagittal plane kinematics following SSL of the medial hamstrings showed improvement of knee extension at initial contact of 10.2 degrees (P<0.001), decrease of peak knee flexion in mid-swing of 3.6 degrees (P=0.014), improved minimum knee flexion in stance of 4.9 degrees (P=0.002), and no significant change in mean anterior pelvic tilt (P=0.123). Mean peak isometric knee flexion torque remained unchanged from preoperative to postoperative studies (P=0.154), whereas mean peak isokinetic knee flexion torque significantly increased by 0.076 Nm/kg (P=0.014) following medial hamstring SSL. DISCUSSION: SSL was developed based upon clinical experience and improved understanding of the pathophysiology of skeletal muscle in children with CP. The SSL technique allows the tendinous tissue to separate spontaneously at the time of recession, but does not force further acute lengthening by intraoperative manipulation, thereby minimizing the damage to the underlying muscle. It is broadly believed that muscle weakness is inevitable following surgical lengthening. The current study shows that the SSL technique does not cause weakness. LEVEL OF EVIDENCE: Level IV-therapeutic.

Correlation Between Standard Upper Extremity Impairment Measures and Activity-based Function Testing in Upper Extremity Cerebral Palsy.

BACKGROUND: Although the treatment of cerebral palsy should be based on improving function as assessed by measures of impairment, activity, and participation, the standard indications for surgical treatment of upper extremity cerebral palsy (UECP) are impairment measures, primarily active and passive range of motion (ROM). Recently, validated activity measures have been developed for children with UECP. The purposes of this study were to determine the relationship between impairment and activity measures in this population, and whether measures of activity correlate with each other. METHODS: A total of 37 children, ages 5 to 16 years, who met standard ROM surgical indications for UECP were evaluated with the impairment measures of active and passive ROM and stereognosis, as well as 3 activity measures [Assisting Hand Assessment (AHA), Box and Blocks test, and the Shriners Hospitals Upper Extremity Evaluation Dynamic Positional Analyses (SHUEE DPA)]. Impairment measures were correlated with activity measures using Spearman rank correlation coefficients. RESULTS: Impairment measures showed inconsistent correlation with activity measures. Of the 12 comparisons, only 4 correlated: active forearm supination (ρ=0.47, P=0.003), wrist extension (ρ=0.55, P=0.001), and stereognosis scores (ρ=0.54, P=0.001) were correlated with AHA; and wrist extension was correlated with the SHUEE DPA (ρ=0.41, P=0.01). When the results of activity tests were compared, the AHA was correlated with the Box and Blocks tests (ρ=0.63, P<0.001), and the SHUEE DPA and Box and Blocks tests were correlated with each other (ρ=0.35, P=0.04). CONCLUSIONS: The goal of surgery in UECP is to improve the child's ability to perform activities, and ultimately to participate in life situations. Impairment measures, such as ROM, were inconsistently correlated with validated measures of activity. Some activity measures correlated with each other, although they did not correlate with the same impairment measures. We conclude that impairment measures, including ROM, do not consistently predict functional dynamic ROM used to perform activities for children with UECP. Activity limitation measures may provide more appropriate indicators than impairment measures for upper extremity surgery for this population. LEVEL OF EVIDENCE: Level II-diagnostic.

Outcomes of Cutaneous Scar Revision During Surgical Implant Removal in Children with Cerebral Palsy.

BACKGROUND: Children who have had surgery involving the placement of an implant frequently undergo a subsequent surgery for hardware removal. The cosmesis of surgical scars following initial and subsequent surgeries is unpredictable. Scar incision (subsequent surgical incision through the initial scar) or excision (around the initial scar) is selected on the basis of the quality of the initial scar. The outcomes following these techniques have not been determined. METHODS: This prospective, consecutive case series was designed to compare outcomes following surgical scar incision versus excision at the time of implant removal in children with cerebral palsy. Photographs of the scars were made preoperatively and at 6 and 12 months following implant removal and were graded for scar quality utilizing the modified Stony Brook Scar Evaluation Scale (SBSES). Parental assessment of scar appearance was performed at the same time points utilizing a visual analog cosmetic scale (VACS). RESULTS: The scars that were selected for incision had significantly worse SBSES scores at 6 and 12 months following the second surgery compared with preoperative values. However, parents' VACS scores of the incised scars, although worse at 6 months, were comparable with preoperative scores at 12 months. Scars that were selected for excision had significantly worse SBSES scores at 6 months but scores that were comparable with preoperative values at 12 months. VACS scores for the excised scars were comparable at the 3 time points. CONCLUSIONS: Surgical incisions that initially healed with good scar quality generally healed well (from the parents' perspective) following subsequent incision through the previous scar. Surgical incisions that initially healed with poor scar quality did not heal better following excision of the previous scar. In such situations, surgical excision of the existing scar should occur in conjunction with additional adjuvant therapies to improve cosmesis. LEVEL OF EVIDENCE: Therapeutic Level II. See Instructions for Authors for a complete description of levels of evidence.

The Effect of Treatment on Stereognosis in Children With Hemiplegic Cerebral Palsy.

PURPOSE: To determine if rehabilitation alone or combined with surgery or botulinum toxin injection improved stereognosis in children with hemiplegic cerebral palsy. METHODS: Inclusion criteria were children with spastic hemiplegic cerebral palsy who had stereognosis testing 2 separate times with documentation of intervening treatment. Sixty-three children were included, 30 girls and 33 boys at an average age of 9.1 years (range, 4.4-16.0 years). Twelve standardized objects were used for manual identification. Baseline and postintervention stereognosis results were recorded for the hemiplegic and the dominant limb of each patient. The patients were separated into 3 groups based on intervening treatment: surgery with rehabilitation (27 patients), botulinum toxin injection with rehabilitation (19 subjects), and rehabilitation alone (7 subjects). Results were also analyzed by patient age group. RESULTS: Baseline testing of the hemiplegic limb revealed that 27 patients (43%) exhibited severe stereognosis impairment (0-4 objects identified correctly), 18 (28%) were moderately impaired (5-8 objects), 13 (21%) were mildly impaired (9-11 objects), and 5 (8%) had intact stereognosis (12 objects). There was no statistically significant difference in change in stereognosis scores postintervention among the 3 different treatment groups or between patients who had surgery and those who did not have surgery. There was no statistically significant difference in stereognosis function or postintervention change based on patient age at time of testing. CONCLUSIONS: In this study, 92% of children with spastic hemiplegic cerebral palsy had stereognosis impairment with a wide spectrum of severity. After operative or nonoperative treatment interventions, stereognosis as a secondary outcome measure was not changed. TYPE OF STUDY/LEVEL OF EVIDENCE: Therapeutic III.

Tendon transfer surgery in upper-extremity cerebral palsy is more effective than botulinum toxin injections or regular, ongoing therapy.

BACKGROUND: For children with upper-extremity cerebral palsy (CP) who meet standard indications for tendon transfer surgery, we hypothesized that surgical treatment would result in greater functional improvement than treatment with botulinum toxin injections or regular, ongoing therapy. METHODS: Thirty-nine children with upper-extremity CP, who were four to sixteen years of age and surgical candidates for the transfer of the flexor carpi ulnaris to the extensor carpi radialis brevis, pronator teres release, and extensor pollicis longus rerouting with adductor pollicis release, were prospectively assigned, either randomly (twenty-nine patients) or by patient/family preference (ten patients), to one of three treatment groups: surgical treatment (Group 1); botulinum toxin injections (Group 2); or regular, ongoing therapy (Group 3). Seven centers participated. Assessment measurements included active range of motion, pinch and grip strength, stereognosis, and scores as measured with eight additional functional or patient-oriented outcome instruments. Thirty-four patients (twenty-five randomized and nine from the patient-preference arm) were evaluated twelve months post-treatment as the study cohort. RESULTS: For the primary outcome of the Shriners Hospital Upper Extremity Evaluation (SHUEE) dynamic positional analysis (DPA), significantly greater improvement was seen in Group 1 than in the other two groups (p < 0.001). Improvements in SHUEE DPA reflected improved supination and wrist extension during functional activities after surgical treatment. Group 1 showed more improvement in the Pediatric Quality of Life Inventory (PedsQL) CP module domain of movement and in the Canadian Occupational Performance Measure (COPM) score for satisfaction than Groups 2 and 3. Both Groups 1 and 3 showed more improvement in pinch strength than did Group 2. CONCLUSIONS: For children with upper-extremity CP who were candidates for standard tendon transfer, surgical treatment was demonstrated to provide greater improvement, of modest magnitude, than botulinum toxin injections or regular, ongoing therapy at twelve months of follow-up for the SHUEE DPA, the PedsQL CP module domain of movement, and COPM satisfaction.

Affected and contralateral hand strength and dexterity measures in children with hemiplegic cerebral palsy.

PURPOSE: To determine how the affected hemiplegic hand and contralateral dominant hand in children with hemiplegic cerebral palsy compare with age-matched norms for grip strength, pinch strength, and dexterity. METHODS: We enrolled 37 children with hemiplegic cerebral palsy (26 boys; average age, 9.8 y). Grip and pinch strength and Box and Blocks Test for dexterity were measured in both hands. Affected and contralateral hands results were analyzed and compared with each other and with norms for age and sex. RESULTS: Affected hands had significantly less grip and pinch strength than the contralateral hands. Subjects transported significantly fewer blocks in one minute with the Box and Blocks Test (mean, 10.8 blocks) with the affected hand than the contralateral hand. Compared with normative values, affected-side grip and pinch strengths were significantly less, whereas contralateral hand grip and pinch strengths were similar. Dexterity in both affected and contralateral hands was significantly less than normative values. Decreased dexterity in the contralateral hand was correlated with decreased nonverbal intelligence quotient. CONCLUSIONS: Dexterity of the contralateral hand is diminished in children with hemiplegia. Assessment of the contralateral hand may reveal opportunities for therapeutic intervention that improve fine motor function. TYPE OF STUDY/LEVEL OF EVIDENCE: Therapeutic IV.

The prevalence, rate of progression, and treatment of elbow flexion contracture in children with brachial plexus birth palsy.

BACKGROUND: 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. METHODS: 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. RESULTS: 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). CONCLUSIONS: 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.

Long-term postoperative outcomes after axillary contracture release in children with burns.

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.

Challenges of randomized controlled surgical trials.

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.

Comparison of self-reports and parent proxy-reports of function and quality of life of children with below-the-elbow deficiency.

BACKGROUND: 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. METHODS: 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). RESULTS: 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). CONCLUSIONS: 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.

A prospective cohort study of the effects of lower extremity orthopaedic surgery on outcome measures in ambulatory children with cerebral palsy.

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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. LEVEL OF EVIDENCE: Therapeutic level 2. Prospective comparative study.

Analysis of upper extremity motion in children after axillary burn scar contracture release.

Burns to the upper extremity and axilla frequently result in the formation of contractures that can impede shoulder range of motion. The purpose of this study was to determine the long-term effects of upper extremity burn scar contracture release on motion during activities of daily living in the first year postrelease. Upper extremity motion analysis was conducted on children aged 4 to 17 years before and 1, 3, 6, and 12 months after axillary contracture release surgery. Movements were analyzed during three functional tasks including high reach (reaching for an object), hand to head (combing hair), and hand to back pocket (toileting). A total of 23 subjects (34 axillary contractures; mean age 10+/-3 years; mean TBSA burn 40+/-6%) completed the study. Preoperatively, decreased shoulder mobility due to axillary contractures resulted in the use of compensatory motions to complete the tested activities. Surgical release of the contracture increased shoulder mobility and decreased compensatory movements. Improvements were maintained for 1 year after surgery with majority of the improvement involving shoulder flexion. Axillary contracture release surgery improves functional shoulder mobility and decreases compensatory motions used during activities of daily living in the first year postrelease. Additional follow-up is needed to evaluate the impact of growth on scar development.

Pediatric outcomes data collection instrument scores in ambulatory children with cerebral palsy: an analysis by age groups and severity level.

BACKGROUND: The Pediatric Outcomes Data Collection Instrument (PODCI) was developed in 1994 as a patient-based tool for use across a broad age range and wide array of musculoskeletal disorders, including children with cerebral palsy (CP). The purpose of this study was to establish means and SDs of the Parent PODCI measures by age groups and Gross Motor Function Classification System (GMFCS) levels for ambulatory children with CP. METHODS: This instrument was one of several studied in a prospective, multicenter project of ambulatory patients with CP between the aged 4 and 18 years and GMFCS levels I through III. Participants included 338 boys and 221 girls at a mean age of 11.1 years, with 370 diplegic, 162 hemiplegic, and 27 quadriplegic. Both baseline and follow-up data sets of the completed Parent PODCI responses were statistically analyzed. RESULTS: Age was identified as a significant predictor of the PODCI measures of Upper Extremity Function, Transfers and Basic Mobility, Global Function, and Happiness With Physical Condition. Gross Motor Function Classification System levels was a significant predictor of Transfers and Basic Mobility, Sports and Physical Function, and Global Function. Pattern of involvement, sex, and prior orthopaedic surgery were not statistically significant predictors for any of the Parent PODCI measures. Mean and SD scores were calculated for age groups stratified by GMFCS levels. Analysis of the follow-up data set validated the findings derived from the baseline data. Linear regression equations were derived, with age as a continuous variable and GMFCS levels as a categorical variable, to be used for Parent PODCI predicted scores. CONCLUSIONS: The results of this study provide clinicians and researchers with a set of Parent PODCI values for comparison to age- and severity-matched populations of ambulatory patients with CP.

Impact of prostheses on function and quality of life for children with unilateral congenital below-the-elbow deficiency.

BACKGROUND: Children with unilateral congenital below-the-elbow deficiency present a dilemma to clinicians. Parents want the child to have a prosthesis and, because it seems that the deficiency will cause functional problems, one is customarily prescribed for infants. Use of the prosthesis is then encouraged throughout childhood. However, these children frequently abandon the prosthesis. There are no evidence-based guidelines regarding prescription of prostheses or standard methods for assessing use and function. METHODS: A multicenter outcomes study was done to assess the quality of life and function of 489 children with a unilateral congenital below-the-elbow deficiency; 321 wore a prosthesis, and 168 did not. The Unilateral Below-the-Elbow Test (UBET) was designed, validated, and administered to these children along with several outcomes measures, including the Pediatric Outcomes Data Collection Instrument (PODCI), the Pediatric Quality of Life Inventory (PedsQL), and the Prosthetic Upper Extremity Functional Index (PUFI). RESULTS: Use of a prosthesis was not associated with any clinically relevant differences in PODCI or PedsQL scores. Non-wearers performed either the same as or better than wearers on the UBET. When queried (with use of the PUFI) about performance of various tasks, non-wearers scored themselves higher than wearers. Children with a unilateral congenital below-the-elbow deficiency scored the same as or higher than the general population on the PedsQL. They scored significantly lower than the general population on the PODCI Upper Extremity Physical Function Domain and higher on the Happiness Domain, but the differences were small. CONCLUSIONS: Prostheses may help with social acceptance or may be useful as tools for specialized activities, but they do not appear to improve function or quality of life, which are nearly normal for children with unilateral congenital below-the-elbow deficiency regardless of whether they wear a prosthesis. These findings call into question the standard practices of fitting infants with prostheses and encouraging young children to wear the prosthesis.