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.

A Bayesian shared components modeling approach to develop small area indicators of social determinants of health with measures of uncertainty.

OBJECTIVES: Existing Canadian social determinants of health (SDOH) indicators do not quantify uncertainty to identify priority areas. The objectives of this methodologic study were: (1) to estimate and map small area (dissemination area) shared and variable-specific SDOH indicators with measures of uncertainty using a Bayesian model that accounts for spatial dependence; (2) to quantify geographic variation in the SDOH indicators and their contribution to a shared indicator; and (3) to assess the SDOH indicators' associations with behavioural risk factors and their consistency with the Ontario Marginalization Index (ON-Marg). METHODS: Lower education-, income-, unemployment-, living alone- and visible minority-related variables used in existing Canadian SDOH indices were fit as dependent variables to a Bayesian model to produce area-based SDOH indicators that were mapped with measures of uncertainty in two study areas. The fractions of spatial variation explained by the model components were computed. Bayesian analysis of variance was used to examine the SDOH indicator associations with behavioural risk factors and their consistency with ON-Marg examined using Pearson's correlation coefficient. RESULTS: The shared component was strongly associated with material deprivation (i.e., income) in each study area; however, variable-specific SDOH indicators were important too. The SDOH indicators were associated with behavioural risk factors for chronic disease, particularly alcohol consumption and smoking, and the shared component estimates were consistent with the ON-Marg material deprivation. CONCLUSIONS: The Bayesian approach to produce SDOH indicators met the three study objectives and as such provides a new approach to prioritize areas that may experience health inequalities.

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.

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.