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

AIM: To assess the association between epilepsy characteristics and proxy-reported health-related quality of life (HRQoL) in children and young people with non-ambulatory cerebral palsy (CP) and seizures. METHOD: This was a cross-sectional study of 164 children and young people (74 females, 90 males; mean age 10 years 6 months, range 2-21 years, SD 5 years 5 months). Caregivers completed the Child Health Index of Life with Disabilities (CPCHILD) in an outpatient setting. We utilized univariable linear regression and multivariable modeling to study relationships between variables and CPCHILD scores. RESULTS: Gross Motor Function Classification System levels were 37% IV and 63% V. Sociodemographic factors included the Child Opportunity Index (median 51, interquartile range [IQR] 25-80). A median of 2 (IQR 1-3) antiseizure medications (ASMs) were used, and days with seizures ranged from 0 (30%) to 28 (20%) days in the previous 4 weeks. Total CPCHILD scores decreased 2.3 points for each ASM (95% confidence interval [CI] -4.1 to -0.42). Compared to persons with focal epilepsy, those with generalized epilepsy had lower total CPCHILD scores (-5.7; 95% CI -11 to -0.55). Number of days with seizures was not associated with total CPCHILD scores. INTERPRETATION: Proxy-reported HRQoL was affected by epilepsy-specific features in children and young people with severe CP. WHAT THIS PAPER ADDS: Health-related quality of life (HRQoL) was lower with increasing numbers of antiseizure medications. Overall quality of life (QoL) scores were lower by a similar amount, independent of seizure frequency. HRQoL was lower in persons with recent hospital admissions for epilepsy.

Test-Retest Reliability and Construct Validity of the German Translation of the Gait Outcome Assessment List (GOAL) Questionnaire for Children with Ambulatory Cerebral Palsy.

The Gait Outcome Assessment List (GOAL) is a patient or caregiver-reported assessment of gait-related function across different domains of the International Classification of Functioning, Disability, and Health (ICF) developed for ambulant children with cerebral palsy (CP). So far, the questionnaire is only available in English. The aim of this study was to translate the GOAL into German and to evaluate its reliability and validity by studying the association between GOAL scores and gross motor function as categorized by the gross motor function classification system (GMFCS) in children with cerebral palsy (CP). The GOAL was administered to primary caregivers of n = 91 children and adolescents with CP (n = 32, GMFCS levels I; n = 27, GMFCS level II; and n = 32, GMFCS level III) and n = 15 patients were capable of independently completing the whole questionnaire (GMFCS level I). For assessing test-retest reliability, the questionnaire was completed for a second time 2 weeks after the first by the caregivers of n = 36 patients. Mean total GOAL scores decreased significantly with increasing GMFCS levels with scores of 71 (95% confidence interval [CI]: 66.90-74.77) for GMFCS level I, 56 (95% CI: 50.98-61.86) for GMFCS level II, and 45 (95% CI: 40.58-48.48) for GMFCS level III, respectively. In three out of seven domains, caregivers rated their children significantly lower than children rated themselves. The test-retest reliability was excellent as was internal consistency given the GOAL total score. The German GOAL may serve as a much needed patient-reported outcome measure of gait-related function in ambulant children and adolescents with CP.

Development of the gait outcomes assessment list for lower-limb differences (GOAL-LD) questionnaire: a child and parent reported outcome measure.

BACKGROUND: To develop a priority-based patient/parent reported outcome measure for children with lower-limb differences (LD) by adapting the Gait Outcomes Assessment List (GOAL) questionnaire. METHODS: Guided by a conceptual framework of patient priorities, the GOAL questionnaire was iteratively modified and its sensibility evaluated by field-testing it on children with LD, and their parents. Cognitive interviews were conducted with a subgroup of these children, and an e-survey administered to a multidisciplinary group of health care professionals with expertise in paediatric LD. Findings were integrated to create the final version of the GOAL-LD. RESULTS: Twenty-five children (9-18 years), 20 parents, and 31 healthcare professionals evaluated the content and sensibility of the GOAL, with an emphasis on the relevance and importance of the items to patients' health related quality of life (HRQL). This resulted in the retention of 26 of the original 50 items, elimination of 12, modification of 12, and addition of seven new items. The new 45-item GOAL-LD questionnaire was shown to be sensible, and its content deemed important. CONCLUSIONS: The GOAL-LD questionnaire has a high level of face and content validity, and sensibility. It comprehensively captures the HRQL goals and outcomes that matter to children with LD and their parents. Following further psychometric evaluation, the GOAL-LD may serve as a much needed patient and parent reported outcome measure for this population.

The Gait Outcomes Assessment List for Children With Lower Limb Difference (GOAL-LD): Assessment of Reliability and Validity.

BACKGROUND: The Gait Outcomes Assessment List for children with Lower Limb Difference (GOAL-LD) is a patient and parent-reported outcome measure that incorporates the framework of the International Classification of Functioning, Disability, and Health. This prospective multicenter cohort study evaluates the validity and reliability of the GOAL-LD and the differences between parent and adolescent report. METHOD: One hundred thirty-seven pediatric patients aged over 5 years attending limb reconstruction clinics at the participating sites were assessed at baseline, and a self-selected cohort also completed an assessment 2 to 6 weeks later. Construct and criterion validity were assessed by comparing GOAL-LD scores with a measure of limb deformity complexity (LLRS-AIM) and the Pediatric Outcomes Data Collection Instrument, using Spearman correlation coefficients. Face and content validity were determined through ratings of item importance. Test-retest reliability was reported as an intraclass correlation coefficient and internal consistency using Cronbach α. Adolescent reports were compared with their parents using paired t tests. RESULTS: The GOAL-LD demonstrated a moderate negative correlation with the LLRS-AIM (r=-0.40, P<0.001) and was able to discriminate between deformity complexity groups as defined by the LLRS-AIM (χ2=11.43, P=0.022). Internal consistency was high across all domains (α≥0.68 to 0.97). Like domains of the Pediatric Outcomes Data Collection Instrument and the GOAL-LD were well correlated. Parents reported a lower total GOAL-LD score when compared with adolescents (mean difference 3.04; SE 1.06; 95% confidence interval, 0.92-5.16; P<0.01); however this difference was only significant for body image and self-esteem (Domain F) and gait appearance (Domain D). Test-retest reliability remained high over the study period (intraclass correlation coefficient 0.85; SE 0.03; 95% confidence interval, 0.77-0.91). CONCLUSIONS: The GOAL-LD is a valid and reliable self and parent-reported outcome measure for children with lower limb difference. Parents report a lower level of function and attribute a higher importance to items when compared with their children. The GOAL-LD helps to communicate parent and child perspectives on their function and priorities and therefore has the capacity to facilitate family centered treatment planning and care. LEVEL OF EVIDENCE: Level II-diagnostic. Prospective cross-sectional and a longitudinal cohort design.

Variability in Postoperative Immobilization and Rehabilitation Following Reconstructive Hip Surgery in Nonambulatory Children With Cerebral Palsy.

BACKGROUND: Despite being a common procedure, there are no standard protocols for postoperative immobilization and rehabilitation following reconstructive hip surgery in children with cerebral palsy (CP). The purpose of this study was to investigate variability in postoperative management and physical therapy (PT) recommendations among orthopaedic surgeons treating hip displacement in children with CP. METHODS: An invitation to participate in an anonymous, online survey was sent to 44 pediatric orthopaedic surgeons. The case of a child undergoing bilateral femoral varus derotation osteotomies and adductor tenotomies was presented. Surgeons were asked to consider their typical practice and the case scenario when answering questions related to immobilization, weight-bearing, and rehabilitation. Recommendations with increasingly complex surgical interventions and different age or level of motor function were also assessed. RESULTS: Twenty-eight orthopaedic surgeons from 9 countries with a mean 21.3 years (range: 5 to 40 y) of experience completed the survey. Postoperative immobilization was recommended by 86% (24/28) of respondents with 7 different methods of immobilization identified. All but 1 (23/24) reported immobilizing full time. Most (20/23) reported using immobilization for 4 to 6 weeks. Return to weight-bearing varied from 0 to 6 weeks for partial weight-bearing and 0 to 12 weeks for full weight-bearing. PT in the first 1 to 2 weeks postoperatively was reported as unnecessary by 29% (8/28) of surgeons. PT for range of motion, strengthening, and return to function was recommended by 96% (27/28) of surgeons, starting at a mean of 2.6 weeks postoperatively (range: 0 to 16 wk). Only 48% (13/27) reported all of their patients would receive PT for these goals in their practice setting. Inpatient rehabilitation was available for 75% (21/28) but most surgeons (17/21) reported this was accessed by 20% or fewer of their patients. CONCLUSIONS: Postoperative immobilization and PT recommendations were highly variable among surgeons. This variability may influence surgical outcomes and complication rates and should be considered when evaluating procedures. Further study into the impact of postoperative immobilization and rehabilitation is warranted.

Differences in responses to English and Korean versions of the Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD).

BACKGROUND: The purpose of this study was to identify differences in caregiver responses to Korean-language and English-language versions of the Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD) questionnaire. METHODS: Patient data were acquired from the Cerebral Palsy Hip Outcomes Project database, which was established to run a large international multicenter prospective cohort study of the outcomes of hip interventions in cerebral palsy. Thirty-three children whose caregivers had completed the Korean version of CPCHILD were matched by propensity scoring with 33 children whose parents completed the English version. Matching was performed on the basis of 12 covariates: age, gender, gross motor function classification system level, migration percentage of right and hip, seizure status, feeding method, tracheostomy status, pelvic obliquity, spinal deformity, parental report of hip pain and contracture interfering with care. RESULTS: There were no significant differences in CPCHILD scores for section 4 (Communication and Social Interaction), and section 5 (Health) between two groups. Korean-language CPCHILD scores were significantly lower than English-language CPCHILD scores for section 1 (Personal Care/Activities of Daily Living), section 2 (Positioning, Transferring and Mobility), section 3 (Comfort and Emotions) and section 6 (Overall Quality of Life) as well as in terms of total score. CONCLUSIONS: Cultural influences, and the community or social environment may impact the caregivers' perception of the health-related quality of life of their children. Therefore, physicians should consider these differences when interpreting the study outcomes across different countries.

Decision aids available for parents making end-of-life or palliative care decisions for children: A scoping review.

AIM: To identify and assess the quality of decision aids that align the decision, values and information provided for parents making end-of-life or palliative care decisions for children with life-threatening conditions. METHODS: Six databases and the grey literature were searched in December 2018. Two reviewers independently reviewed database citations, and one reviewed grey literature citations. Citation chaining via Scopus was conducted. Quality was assessed using IPDAS Collaboration Criteria. RESULTS: After reviewing 18 671 database citations and 10 988 grey literature citations, 18 citations describing 11 decision aids remained. Decision aids targeted premature infants, children requiring airway management, children with cancer and children with scoliosis. Three aids underwent testing beyond initial development. Quality scores averaged 27 of 50 points. CONCLUSIONS: There are few high-quality decision aids available for use and a lack evidence of widespread clinical use. Additional research is needed to support systematic development and the use of decision aids with families.

Improving Health-related Quality of Life for Patients With Nonambulatory Cerebral Palsy: Who Stands to Gain From Scoliosis Surgery?

INTRODUCTION: It is unclear what factors influence health-related quality of life (HRQOL) in neuromuscular scoliosis. The aim of this study was to evaluate which factors are associated with an improvement in an HRQOL after spinal fusion surgery for nonambulatory patients with cerebral palsy (CP). METHODS: A total of 157 patients with nonambulatory CP (Gross Motor Function Classification System IV and V) with a minimum of 2-year follow-up after PSF were identified from a prospective multicenter registry. Radiographs and quality of life were evaluated preoperatively and 2 years postoperatively. Quality of life was evaluated using the validated Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) questionnaire. Patients who had an increase of 10 points or greater from baseline CPCHILD scores were considered to have meaningful improvement at 2 years postoperatively. 10 points was chosen as a threshold for meaningful improvement based on differences between Gross Motor Function Classification System IV and V patients reported during the development of the CPCHILD. Perioperative demographic, clinical, and radiographic variables were analyzed to determine predicators for meaningful improvement by univariate and multivariate regression analysis. RESULTS: A total of 36.3% (57/157) of the patients reported meaningful improvement in CPCHILD scores at 2 years postoperatively. Preoperative radiographic parameters, postoperative radiographic parameters, and deformity correction did not differ significantly between groups. Patients who experienced meaningful improvement from surgery had significantly lower preoperative total CHPILD scores (43.8 vs. 55.2, P<0.001). On backwards conditional binary logistic regression, only the preoperative comfort, emotions, and behavior domain of the CPCHILD was predictive of meaningful improvement after surgery (P≤0.001). CONCLUSION: Analysis of 157 CP patients revealed a meaningful improvement in an HRQOL in 36.3% of the patients. These patients tended to have lower preoperative HRQOL, suggesting more "room for improvement" from surgery. A lower score within the comfort, emotions, and behavior domain of the CPCHILD was predictive of meaningful improvement after surgery. Radiographic parameters of deformity or curve correction were not associated with meaningful improvement after surgery. LEVEL OF EVIDENCE: Level II-retrospective review of prospectively collected data.

Development and content validation of the Muscular Dystrophy Child Health Index of Life with Disabilities questionnaire for children with Duchenne muscular dystrophy.

AIM: To develop a patient-reported outcome measure that comprehensively captures the health-related priorities of children with Duchenne muscular dystrophy (DMD). METHOD: Children with DMD and their parents completed the iteratively revised versions of the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD), followed by a cognitive interview to develop a pilot version of a new measure. Multidisciplinary health care professionals completed an item-by-item analysis of the measure and a 14-item sensibility questionnaire. Minimum content validity ratio for each item of the new measure and the mean score (0-7) for the items of the sensibility questionnaire were calculated. RESULTS: The CPCHILD underwent changes over 19 interviews with children and their parents, resulting in the pilot Muscular Dystrophy Child Health Index of Life with Disabilities (MDCHILD). The content validity ratio of each MDCHILD item ranged from 0.85 to 1 based on health care professionals' ratings. The mean score exceeded the threshold of four for all items of the sensibility questionnaire. Based on child, parent, and health care professional recommendations, 16 items were added, six eliminated, and 15 items modified from the original CPCHILD. The MDCHILD consists of 47 items over seven domains. INTERPRETATION: The MDCHILD met all sensibility criteria by children with DMD, their parents, and health care professionals, and is ready for psychometric evaluation. WHAT THIS PAPER ADDS: The Muscular Dystrophy Child Health Index of Life with Disabilities (MDCHILD) is a new patient-reported outcome measure for Duchenne muscular dystrophy (DMD). The Priority Framework of Outcomes underpins the content for the MDCHILD. The MDCHILD incorporates the health-related priorities of males with DMD and their parents. The MDCHILD was deemed sensible by children, their parents, and health care professionals.

Should Proximal Femoral Implants be Removed Prophylactically or Reactively in Children With Cerebral Palsy?

BACKGROUND: Implants are commonly used to stabilize proximal femoral osteotomies in children with cerebral palsy (CP). Removal of implants is common practice and believed to avoid infection, fracture, or pain that might be associated with retained hardware. There is little evidence to support a prophylactic strategy over a reactive approach based on symptoms. The aim of this study was to compare the outcomes of prophylactic and reactive approaches to removal of proximal femoral implants in children with CP. METHODS: An intention-to-treat model was used to compare 2 institutions that followed a prophylactic (within ∼1 y) and reactive (following complication/symptoms) approach to hardware removal, respectively. Patients with CP who had femoral implants placed at or before age 16, and had ≥2-year postsurgical follow-up were included. Demographics, surgical details, reasons for removal, and complications were recorded. χ and t tests were used. RESULTS: Six hundred twenty-one patients (prophylactic=302, reactive=319) were followed for an average of 6 years (range, 2 to 17 y). Two hundred eighty-seven (95%) implants were removed in the prophylactic group at 1.2 years. In the reactive group, 64 (20%) implants were removed at an average of 4.2 years. Reasons for removal included pain; infection; fracture; or for repeat reconstruction. The rate of unplanned removals due to fracture or infection was higher in the reactive group (4.7% vs. 0.7%, P=0.002), but there was no difference in the rate of complications during/after removal between the 2 groups (1.7% vs. 3.1%; P=0.616). No specific risk factor associated with unplanned removal could be identified; but children under 8 years old seemed more likely to undergo later removal (odds ratio 1.98; 95% confidence interval, 0.99-3.99). CONCLUSIONS: Eighty percent of patients in the reactive removal strategy avoided surgery. This group did have a 4% higher rate of fracture or infection necessitating unplanned removal but these were successfully treated at time of removal with no difference in complication rates associated with removal between both groups. One would need to remove implants from 25 patients to avoid 1 additional complication, providing some support for a reactive approach to removal of proximal femoral implants in this population. LEVEL OF EVIDENCE: Level III-therapeutic.

Reliability of Radiographic Assessments of the Hip in Cerebral Palsy.

INTRODUCTION: Children with cerebral palsy are at risk for progressive hip displacement. Since surveillance for hip displacement uses specific radiographic measurements to guide decision making, it is important to establish the reliability of these measurements, which include Reimer's migration percentage (MP), acetabular index or acetabular angle (AI or AA), and pelvic obliquity (PO). The purpose of this study was to determine the intraobserver and interobserver reliability of these radiographic measures among an international group of pediatric orthopaedic surgeons participating in the prospective international multicenter Cerebral Palsy Hip Outcomes Project (CHOP) currently underway to evaluate the outcomes of hip interventions in cerebral palsy. METHODS: Two compact discs (CDs) containing the same 25 anteroposterior pelvis radiographs in Digital Imaging and Communications in Medicine (DICOM) format were provided to participating surgeons at least 2 weeks apart. To reduce the likelihood of recall or any effects of learning or fatigue, the order of the radiographs varied on the 2 CD versions, and participating surgeons received the 2 CDs in random order. The intraclass correlation coefficients (ICCs) were calculated to assess interobserver and intraobserver reliability. Mean absolute differences of hip measurements obtained at 2 time points were also calculated. RESULTS: The MP had the highest reliability followed by PO, AI, and AA with a mean intrarater ICC (SD; range) of 0.95 (0.04; 0.84 to 0.98); 0.92 (0.03; 0.85 to 0.97); 0.84 (0.05; 0.75 to 0.92); and 0.82 (0.14; 0.51 to 0.98); respectively. The mean interrater ICC (SD; range) for MP, PO, AI, and AA were 0.94 (0.05; 0.78 to 0.99); 0.90 (0.04; 0.76 to 0.99); 0.79 (0.08; 0.52 to 0.93); and 0.69 (0.23; 0.42 to 0.98) for MP, PO, AI, and AA, respectively. The mean (SD; 95% confidence interval) for the absolute difference between the 2 measurements for the raters was 4.9% (2.9%; 3.4%-6.4%); 3. 8 degrees (1.2 degrees; 3.1-4.5 degrees); 2.6 degrees (1.5 degrees; 1.7-3.5 degrees); and 1.3 degrees (0.3 degrees; 1.29-1.31 degrees) for MP, AI, AA, and PO, respectively. CONCLUSIONS: MP is a reproducible measure with excellent intrarater and interrater reliability. However, differences in MP of <7% should be treated with caution as these might be a consequence of measurement error. Although we found a high level of intrarater and interrater reliability of the AI, AA, and PO, these measurements are more variable and not ideal for use as discrete outcome measures. Instead, these parameters might be useful for prognostication and decision making when consistent trends are observed longitudinally over time which might be better indications of true change.

Pain and hospital admissions are important factors associated with quality of life in nonambulatory children.

AIM: This was the first study to investigate the factors associated with health-related quality of life (HRQoL) in nonambulatory children with cerebral palsy (CP), based on a HRQoL measure specifically developed for this population. METHODS: The Dutch version of the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD-DV) was used to measure HRQoL. It was completed by 66 parents of 47 boys and 19 girls with nonambulatory CP aged between five and 18 years with gross motor function classification system (GMFCS) levels of IV and V. Factors measured were the child's motor and cognitive impairments, comorbidities, pain, parents' education and occupations and family structure. Multiple linear regression analyses were used to determine the significant factors and the relative contribution of these factors to the CPCHILD-DV scores. RESULTS: The most important factors associated with poorer HRQoL scores were pain and hospital admissions in the previous six months. Other factors were as follows: increased GMFCS level, feeding by gastrostomy tube, inability to communicate verbally, cognitive impairment, poor seizure control and higher parents' educational qualifications. CONCLUSION: Pain and hospital admissions were the most important factors that were negatively associated with HRQoL in nonambulatory children with CP between five to 18 years.

What Is the Impact of Center Variability in a Multicenter International Prospective Observational Study on Developmental Dysplasia of the Hip?

BACKGROUND: Little information exists concerning the variability of presentation and differences in treatment methods for developmental dysplasia of the hip (DDH) in children < 18 months. The inherent advantages of prospective multicenter studies are well documented, but data from different centers may differ in terms of important variables such as patient demographics, diagnoses, and treatment or management decisions. The purpose of this study was to determine whether there is a difference in baseline data among the nine centers in five countries affiliated with the International Hip Dysplasia Institute to establish the need to consider the center as a key variable in multicenter studies. QUESTIONS/PURPOSES: (1) How do patient demographics differ across participating centers at presentation? (2) How do patient diagnoses (severity and laterality) differ across centers? (3) How do initial treatment approaches differ across participating centers? METHODS: A multicenter prospective hip dysplasia study database was analyzed from 2010 to April 2015. Patients younger than 6 months of age at diagnosis were included if at least one hip was completely dislocated, whereas patients between 6 and 18 months of age at diagnosis were included with any form of DDH. Participating centers (academic, urban, tertiary care hospitals) span five countries across three continents. Baseline data (patient demographics, diagnosis, swaddling history, baseline International Hip Dysplasia Institute classification, and initial treatment) were compared among all nine centers. A total of 496 patients were enrolled with site enrolment ranging from 10 to 117. The proportion of eligible patients who were enrolled and followed at the nine participating centers was 98%. Patient enrollment rates were similar across all sites, and data collection/completeness for relevant variables at initial presentation was comparable. RESULTS: In total, 83% of all patients were female (410 of 496), and the median age at presentation was 2.2 months (range, 0-18 months). Breech presentation occurred more often in younger (< 6 months) than in older (6-18 months at diagnosis) patients (30% [96 of 318] versus 9% [15 of 161]; odds ratio [OR], 4.2; 95% confidence interval [CI], 2.3-7.5; p < 0.001). The Australia site was underrepresented in breech presentation in comparison to the other centers (8% [five of 66] versus 23% [111 of 479]; OR, 0.3, 95% CI, 0.1-0.7; p = 0.034). The largest diagnostic category was < 6 months, dislocated reducible (51% [253 of 496 patients]); however, the Australia and Boston sites had more irreducible dislocations compared with the other sites (ORs, 2.1 and 1.9; 95% CIs, 1.2-3.6 and 1.1-3.4; p = 0.02 and 0.015, respectively). Bilaterality was seen less often in older compared with younger patients (8% [seven of 93] versus 26% [85 of 328]; p < 0.001). The most common diagnostic group was Grade 3 (by International Hip Dysplasia Institute classification), which included 58% (51 of 88) of all classified dislocated hips. Splintage was the primary initial treatment of choice at 80% (395 of 496), but was far more likely in younger compared with older patients (94% [309 of 328] versus 18% [17 of 93]; p < 0.001). CONCLUSIONS: With the lack of strong prognostic indicators for DDH identified to date, the center is an important variable to include as a potential predictor of treatment success or failure.

Cost Consequence Analysis of Implementing the Low Risk Ankle Rule in Emergency Departments.

STUDY OBJECTIVE: Implementation of the Low Risk Ankle Rule can safely reduce radiographs for children with acute ankle injuries. The main objective of this study is to examine the costs and consequences of implementing the rule. METHODS: For children aged 3 to 16 years and with an acute ankle injury, we collected data on health care provider visits, imaging, and treatment at the index emergency department (ED) visit and days 7 and 28 post-ED discharge. This was done during 3 consecutive 6-month phases at 6 EDs. After the baseline phase 1, the Low Risk Ankle Rule was introduced in phases 2 and 3 in 3 intervention EDs, but not in the 3 pair-matched control EDs. We compared the effect of the Low Risk Ankle Rule on health care and patient-paid costs, the proportion of radiographs ordered, the proportion of missed clinically important fractures, and the follow-up use of health care resources. RESULTS: We enrolled 2,151 children with ankle injuries, 1,055 at the intervention and 1,096 at the control EDs. Health care costs were $36.93 less per patient at intervention compared with control sites (P=.02). Out-of-pocket costs to the patients were $2.09 more per patient at intervention sites (P=.30). In intervention versus control sites, the main contributor to cost reduction was the 22.9% reduction in ankle radiography. Furthermore, there were no significant differences in the frequency of missed clinically important fractures (0.1% versus 0.9%) or follow-up use of health care resources. CONCLUSION: Widespread implementation of the Low Risk Ankle Rule may lead to reduction of unnecessary radiographs for children and result in cost savings.

Evidence into practice: pediatric orthopaedic surgeon use of removable splints for common pediatric fractures.

OBJECTIVES: Removable splints when compared with circumferential casts in randomized trials have been shown to be a safe and cost-effective method of managing many common minor distal radius and fibular fractures. This study estimated the extent to which this evidence is being implemented in clinical practice, and determined the perceived barriers to the adoption of this evidence. METHODS: A cross-sectional survey of practicing orthopaedic surgeon members of the Pediatric Orthopedic Surgeons of North America (POSNA) was conducted, using a 22-item online questionnaire, and distributed using a modified Dillman technique. Survey questions were derived from and validated by literature review, expert opinion, and pilot-testing on the targeted sample before implementation. RESULTS: Of the 826 eligible participants, 558 (67.6%) responded to the survey. Of these, 505 (90.5%) had completed a fellowship in pediatric orthopaedics, 335 (60.0%) worked in a university-affiliated setting, and 377 (67.6%) had been in practice for <20 years. Only 158/543 [29.1%; 95% confidence interval (CI), 25.28, 32.92] reported using a removable splint to treat buckle fractures of the distal radius; 32 (5.9%; 95% CI, 3.9, 7.9) and 8 (1.5%; 95% CI, 0.5, 2.5) would use such splints for minimally displaced greenstick and transverse fractures of the distal radius, respectively. For distal fibular avulsion fractures, 122 (22.5%; 95% CI, 19.0, 26.0) would use a removable splint; 57 (10.5%; 95% CI, 7.9, 13.1) and 28 (5.6%; 95% CI, 3.7, 7.5) would do so for nondisplaced Salter-Harris I and II fractures of the distal fibula, respectively. The most commonly reported perceived barriers to application of a removable device were concerns about patient compliance, potential complications, and possible medicolegal implications. CONCLUSIONS: Only a relatively small proportion of practicing POSNA use such splints for minor distal radius and distal fibular fractures. These data support the need for implementation of knowledge translation strategies (eg, education) targeted at all the stakeholders to encourage pediatric orthopaedic surgeons to change practice in keeping with the best evidence for these common and stable injuries. LEVEL OF EVIDENCE: Level II.

German translation of the caregiver priorities and child health index of life with disabilities questionnaire: test-retest reliability and correlation with gross motor function in children with cerebral palsy.

We aimed to translate the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) questionnaire into German and to evaluate its reliability and validity by studying the association between CPCHILD scores and gross motor function as measured by the gross motor function classification system (GMFCS) in children with cerebral palsy (CP). The original CPCHILD questionnaire and manual were translated and back translated. It was administered to primary caregivers of persons with CP (GMFCS levels III-V) and was completed a second time 2 weeks after the first to measure test-retest reliability (n = 17). Primary caregivers of 68 children with CP; GMFCS level III (n = 14), level IV (n = 28), and level V (n = 26) completed the questionnaire. Mean total CPCHILD scores across GMFCS levels were 67.1 ± 14.9 for GMFCS level III, 56.6 ± 11.8 for level IV, and 44.3 ± 12.9 for level V. Good correlation (r = - 0.56) was observed between GMFCS and total scores test-retest reliability showed intraclass correlation coefficients between 0.4 and 0.9. The German CPCHILD yielded similar test-retest reliability and score distributions across the GMFCS level as the original version. The best correlations were observed for domains that are close to the functional deficits.

Brazilian Portuguese translation and cross-cultural adaptation of the "Caregiver Priorities and Child Health Index of Life with Disabilities" (CPCHILD) questionnaire.

BACKGROUND: Consideration of the quality of life in relation to individual health status is crucial for planning and maintaining a system of patient-centered care. Until recently, there have been no suitable instruments to assess health-related quality of life (HRQoL,) of children and adolescents with severe, non-ambulant cerebral palsy (GMFCS functional levels IV and V). The "Caregiver Priorities and Child Health Index of Life with Disabilities Questionnaire" (CPCHILD) was developed in English specifically for this population, and has been validated in Canada. The aim of this study was to translate and adapt the CPCHILD Questionnaire into Brazilian Portuguese, thus permitting researchers in Brazil to access this important tool for measuring HRQoL in this population, as well as the possibility of making comparisons with other studies that use the same questionnaire in other languages. METHOD: The cross-cultural adaptation included two forward translations by independent translators, their synthesis, two back-translations by independent translators, an assessment of the versions by an expert committee and the development of a pre-final version, which was tested on 30 caregivers of children (5 -18) with severe cerebral palsy (GMFCS IV & V). RESULTS: Despite the relative equivalence between the two translations, some items required adaptations for the synthesized version. Certain modifications were necessary in the pre-final version to achieve idiomatic equivalence. The modifications were required to account for the socioeconomic and cultural levels of the target population. CONCLUSION: The translation and cross-cultural adaptation of the CPCHILD questionnaire provides a Brazilian Portuguese equivalent to measure the HRQoL of children with severe developmental disabilities, with the potential to measure the benefits of various procedures that are indicated for these patients. This adaptation exhibited a satisfactory level of semantic equivalence between the Portuguese target and the original English source versions. The validity of the Brazilian version of the instrument must be established in the future by assessing its psychometric properties on Brazilian epidemiological samples.

Fifteen Years of Spinal Fusion Outcomes in Children With Cerebral Palsy: Are We Getting Better?

STUDY DESIGN: Retrospective multicenter study. OBJECTIVE: We reviewed 15-year trends in operative factors, radiographic and quality of life outcomes, and complication rates in children with cerebral palsy (CP)-related scoliosis who underwent spinal fusion. SUMMARY OF BACKGROUND DATA: Over the past two decades, significant efforts have been made to decrease complications and improve outcomes of this population. MATERIALS AND METHODS: We retrospectively reviewed a multicenter registry of pediatric CP patients who underwent spinal fusion from 2008 to 2020. We evaluated baseline and operative, hospitalization, and complication data as well as radiographic and quality of life outcomes at a minimum 2-year follow-up. RESULTS: Mean estimated blood loss and transfusion volume declined from 2.7±2.0 L in 2008 to 0.71±0.34 L in 2020 and 1.0±0.5 L in 2008 to 0.5±0.2 L in 2020, respectively, with a concomitant increase in antifibrinolytic use from 58% to 97% (all, P <0.01). Unit rod and pelvic fusion use declined from 33% in 2008 to 0% in 2020 and 96% in 2008 to 79% in 2020, respectively (both, P <0.05). Mean postoperative intubation time declined from 2.5±2.6 to 0.42±0.63 days ( P< 0.01). No changes were observed in preoperative and postoperative coronal angle and pelvic obliquity, operative time, frequency of anterior/anterior-posterior approach, and durations of hospital and intensive care unit stays. Improvements in the Caregiver Priorities and Child Health Index of Life with Disabilities postoperatively did not change significantly over the study period. Complication rates, including reoperation, superficial and deep surgical site infection, and gastrointestinal and medical complications remained stable over the study period. CONCLUSIONS: Over the past 15 years of CP scoliosis surgery, surgical blood loss, transfusion volumes, duration of postoperative intubation, and pelvic fusion rates have decreased. However, the degree of radiographic correction, the rates of surgical and medical complications (including infection), and health-related quality of life measures have broadly remained constant.

Determinants of quality of life in children with chronic somatic disease: pilot data from the GapS Questionnaire.

PURPOSE: Quality of life (QoL) is a ubiquitous yet poorly defined concept; the precise determinants of QoL are rarely identified. We used pilot data from the GapS Questionnaire to investigate the most important determinants of QoL in children with chronic somatic illness. METHODS: We enrolled 92 participants including 60 parents and 32 of their children. The sample comprised rheumatology, diabetes, epilepsy, gastroenterology, cystic fibrosis, and day unit patients. Trained interviewers administered the GapS Questionnaire to parents, and to children if ≥ 10 years. We determined the relative importance of different items for QoL. RESULTS: Child participants had a mean age of 14.7 years. Children identified "having good friendships", "being happy most days", and "getting along with parents" as most important. Parents ranked most highly "being allowed to do all the things you like doing", "getting told you have done a good job at something", and "being physically able to do everything you enjoy doing". CONCLUSIONS: Physical health items were not as important as social and psychological determinants of QoL in our pilot sample.

Reliability of assessing proximal femur geometry with Rutz classification schema in patients with cerebral palsy.

Our investigation aimed to assess the reliability of the femoral head shape classification system devised by Rutz et al . and observe its application in patients with cerebral palsy (CP) at different skeletal maturity levels. Four independent observers assessed anteroposterior radiographs of the hips of 60 patients with hip dysplasia associated with non-ambulatory CP (Gross Motor Function Classification System levels IV and V) and recorded the femoral head shape radiological grading system as described by Rutz et al . Radiographs were obtained from 20 patients in each of three age groups: under 8 years, between 8 and 12 years and above 12 years old, respectively. Inter-observer reliability was assessed by comparing the measurements of four different observers. To determine the intra-observer reliability, radiographs were reassessed after a 4-week interval. Accuracy was checked by comparing these measurements with the assessment of expert consensus. Validity was checked indirectly by observing the relationship between the Rutz grade and the migration percentage. The Rutz classification system's evaluation of femoral head shape showed moderate to substantial intra- and inter-observer reliability (mean κ  = 0.64 for intraobserver and mean κ  = 0.5 for interobserver). Specialist assessors had slightly higher intra-observer reliability than trainee assessors. The grade of femoral head shape was significantly associated with increasing migration percentage. Rutz's classification was shown to be reliable. Once the clinical utility of this classification can be established, it has the potential for broad application for prognostication and surgical decision-making and as an essential radiographic variable in studies involving the outcomes of hip displacement in CP. Level of evidence: III.