Ability of PROMIS Pediatric Measures to Detect Change in Children With Cerebral Palsy Undergoing Musculoskeletal Surgery.

BACKGROUND: The Patient Reported Outcomes Measurement Information System (PROMIS) was developed to provide patient-reported outcome measures that are designed as being universally relevant across health conditions, low burden, and precise. A major problem for research and clinical practice in cerebral palsy (CP) is the void of outcomes instruments that are capable of evaluating the wide range of abilities and broad age spectrum inherent in this clinical population. Given the tremendous potential of PROMIS, the research questions for this study were "How do PROMIS pediatric computer adaptive tests and short forms detect change in children with CP following elective musculoskeletal surgery?" and "How do PROMIS instruments compare to the Pediatric Quality of Life Inventory Cerebral Palsy Module Version 3.0 (PedsQL CP), Pediatric Outcomes Data Collection Instrument (PODCI), the Timed Up and Go (TUG), and the Gross Motor Functional Measure (GMFM)." METHODS: PROMIS Pediatric computer adaptive tests and short forms and the PedsQL, PODCI, TUG, and GMFM were administered before and after surgery. Effect size (ES) and standardized response mean (SRM) were calculated. Floor and ceiling effects were evaluated and, exposure rates for the PROMIS item banks were examined. RESULTS: ES and SRM for all PROMIS Pediatric Measures were nonsignificant. PedsQL CP detected significant, positive change in mobility at 6 (ES=0.26; SRM=0.31) and 12 (ES=0.36; SRM=0.36) months; pain at 12 months (ES=0.29; SRM=0.34); and fatigue at 6 (ES=0.24; SRM=0.22) and 12 (ES=0.36; SRM=0.41) months. Significant negative changes were detected by the PODCI (ES=-0.20; SRM=-0.26), GMFM (ES=-0.13; SRM=-0.24), and TUG (ES=-0.29; SRM=-0.25). Ceiling effects were high. Exposure to an appropriate range of the PROMIS Mobility item bank was limited. CONCLUSIONS: PROMIS measures were less able to detect change than other measures. PROMIS measures may be improved by tailoring start/stop rules or by adding items to include content appropriate for children with mobility impairments. LEVEL OF EVIDENCE: Level III-diagnostic study.

Precision and content range of a parent-reported item bank assessing lower extremity and mobility skills in children with cerebral palsy.

AIM: The aim of this study was to determine the psychometric properties, content range, and measurement precision of a lower extremity physical functioning and mobility skills item bank (LE85) in children with cerebral palsy (CP). METHOD: Lower extremity functioning and mobility skill items were administered to 308 parents of children (169 males, 139 females; mean age 10y 8mo, SD 4y) with spastic CP (145 diplegia, 73 hemiplegia, 89 quadriplegia; [for one person type of CP was unknown]) classified using the Gross Motor Function Classification System (75 level I, 91 level II, 79 level III, 37 level IV, 26 level V). Additional legacy measures were administered to assess concurrent validity. Psychometric characteristics, differential item functioning, content range, and score precision were examined. RESULTS: The LE85 had acceptable psychometric properties. Content range matched the ability range of the sample population and exceeded legacy measures with minimal differential item functioning. The LE85 had good correlation with the Paediatric Outcomes Data Collection Instrument, Functional Independence Measure for Children, Gillette Functional Assessment Questionnaire, and Paediatric Quality of Life Inventory-CP module (range r=0.63-0.86). Precision of the LE85 and 10-item simulated computer adaptive test scores outperformed legacy measures. INTERPRETATION: The LE85 appears to be suitable to administer as a computer adaptive test to measure lower extremity physical functioning and mobility in children with CP.

A randomized controlled trial on the effects of cycling with and without electrical stimulation on cardiorespiratory and vascular health in children with spinal cord injury.

OBJECTIVE: To examine the cardiorespiratory/vascular effects of cycling with and without functional electrical stimulation (FES) in children with spinal cord injury (SCI). DESIGN: Randomized controlled trial. SETTING: Pediatric referral hospital. PARTICIPANTS: Children with SCI (N=30), ages 5 to 13 years, with injury levels from C4 to T11, and American Spinal Injury Association grades A, B, or C. INTERVENTIONS: Children were randomly assigned to 1 of 3 groups: FES leg cycling exercise, passive leg cycling, or noncycling control group receiving electrical stimulation therapy. After receiving instruction on the use of the equipment, children exercised for 1 hour 3 times per week for 6 months at home with parental supervision. MAIN OUTCOME MEASURES: Oxygen uptake (Vo(2)) during an incremental arm ergometry test, resting heart rate, forced vital capacity, and a fasting lipid profile. RESULTS: There were no differences (P>.05) between groups after 6 months of exercise when comparing pre- and postvalues. However, there were differences between groups for some variables when examining percent change. The FES cycling group showed an improvement (P=.035) in Vo(2) (16.2%+/-25.0%) as compared with the passive cycling group (-28.7%+/-29.1%). For lipid levels, the electrical stimulation-only group showed declines (P=.032) in cholesterol levels (-17.1%+/-8.5%) as compared with the FES cycling group (4.4%+/-20.4%). CONCLUSIONS: Cycling with FES led to gains in Vo(2), whereas electrical stimulation alone led to improvements in cholesterol.

Quality of life in children with spinal cord injury.

PURPOSE: To compare reports of the child's quality of life (QOL) between children with spinal cord injury (SCI) and their parents using the Pediatric Quality of Life 4.0 Generic Scales (PedsQL), and assess agreement between parent and child responses. To examine the influence of level of injury on QOL and internal consistency reliability of the PedsQL in pediatric SCI. METHODS: Twenty-eight children (17 male children and 11 female children) between five and 13 years and their parents completed the PedsQL. RESULTS: Children rated their QOL better than their parents; however, there was good to excellent parent-child agreement. No differences were noted between children with tetraplegia and paraplegia. Low internal consistency reliability was obtained for various domains. CONCLUSIONS: In addition to using summary scores, specific ratings may raise important points for clinical decision-making. Results on internal consistency reliability suggest the need for condition-specific questionnaires for children with SCI.