Prioritized strategies to improve diagnosis and early management of cerebral palsy for both Maori and non-Maori families.

AIM: To identify prioritized strategies to support improvements in early health service delivery around the diagnosis and management of cerebral palsy (CP) for both Maori and non-Maori individuals. METHOD: Using a participatory approach, health care professionals and the parents of children with CP attended co-design workshops on the topic of early diagnosis and management of CP. Health design researchers facilitated two 'discovery' (sharing experiences and ideas) and two 'prototyping' (solution-focused) workshops in Aotearoa, New Zealand. A Maori health service worker co-facilitated workshops for Maori families. RESULTS: Between 7 and 13 participants (14 health care professionals, 12 parents of children with CP across all functional levels) attended each workshop. The discovery workshops revealed powerful stories about early experiences and needs within clinician-family communication and service provision. The prototyping workshops revealed priorities around communication, and when, what, and how information is provided to families; recommendations were co-created around what should be prioritized within a resource to aid health care navigation. INTERPRETATION: There is a critical need for improved communication, support, and guidance, as well as education, for families navigating their child with CP through the health care system. Further input from families and health care professionals partnering together will continue to guide strategies to improve health care service delivery using experiences as a mechanism for change.

Reported outcomes of lower limb orthopaedic surgery in children and adolescents with cerebral palsy: a mapping review.

AIM: Lower limb surgery is often performed in ambulatory children with cerebral palsy (CP) to improve walking ability. This mapping review reports on outcome measures used in the published literature to assess surgical results, determine range and frequency of use, and map each measure to the International Classification of Functioning, Disability and Health. METHOD: A mapped review of literature published between 1990 and 2011 was carried out to identify papers reporting the outcomes of lower limb orthopaedic surgery in ambulatory children with CP, aged 0 to 20 years. RESULTS: A total of 229 published papers met the inclusion criteria. Thirty-two outcome measures with known psychometric properties were reported in the 229 papers. Twenty measures assess impairments in body structure and function and were used in 91% of studies. Ten measures assess restrictions in activity and participation and were used in 9% of papers. Two measures assessed quality of life. Since 1997, 29% of papers have used the Gross Motor Function Classification System to describe participants. INTERPRETATION: The body of literature evaluating outcomes of lower limb orthopaedic surgery in CP is small but increasing. There is a need to develop a suite of outcome measures that better reflect outcomes across the International Classification of Functioning, Disability and Health, including activity and participation.

How does the functional mobility scale relate to capacity-based measures of walking ability in children and youth with cerebral palsy?

This study examined the relationship between walking performance rated on the Functional Mobility Scale (FMS) and measures of walking capacity in children with cerebral palsy (CP). A total of 143 participants with spastic CP (GMFCS levels I to III) were rated on the FMS and had assessment of self-selected walking speed (WS), fast 1 minute walk test (1MWT) and six minute walk test (6MWT). For each FMS distance, children rated 6 had significantly better 6MWT than children scored 5; children rated FMS 2, 3, or 4 had lower walking capacity measures but were not clearly distinguishable from each other. The 6MWT was an independent predictor of variation in FMS score, accounting for 20% to 27% of the variance across the three FMS distances. While walking capacity impacts on community mobility in children with CP much of the variance remains unexplained, suggesting that other factors play an important role.

Relationship between walk tests and parental reports of walking abilities in children with cerebral palsy.

OBJECTIVES: To test the strength of association between 2 clinic-based measures of walking ability, the 1-minute walk test (1MWT) and the six-minute walk test (6MWT), and the parental report of usual walking performance, measured by the ABILOCO-Kids logit score, in children with cerebral palsy (CP). DESIGN: Observational study. SETTING: Tertiary level outpatient clinics. PARTICIPANTS: Children and youth with CP (N=60; 32 boys, 28 girls; mean age, 11.2y [range, 5-18y]), Gross Motor Function Classification System (GMFCS) level I to IV. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: The 10-item ABILOCO-Kids questionnaire, the 1MWT, and the 6MWT. RESULTS: ABILOCO-Kids logit scores were significantly correlated with the 1MWT (ρ=.70, P<.01) and the 6MWT (ρ=.70, P<.01) but not with age or sex. Linear models revealed a possibly significant difference in the strength of the relationship of the ABILOCO-Kids logit score with walking distance, depending on GMFCS level (P=.06 1MWT; P=.14 6MWT). The strongest relationship was observed at GMFCS level II, where ABILOCO-Kids score predicted 33% of variance in 1MWT (P=.003) and 31% of 6MWT (P=.003). The weakest relationship was at GMFCS level I, where ABILOCO-Kids score predicted only 5% of the variance in 1MWT (P=.33) and 16% of the variance in 6MWT (P=.08). CONCLUSIONS: Parental perceptions of their child's walking ability in the community correlate with clinic-based walking tests in ambulatory children with CP, providing evidence of convergent validity for the 1MWT and 6MWT. However, parents report a much wider range of walking abilities in children who function at a high level (GMFCS I) than is reflected by their walk test results.

Parent-perceived barriers to participation in children and adolescents with cerebral palsy.

AIM: To pilot the use of the Craig Hospital Inventory of Environmental Factors (CHIEF) questionnaire to ascertain information regarding barriers to participation experienced by a sample of New Zealand children with cerebral palsy. METHODS: The CHIEF questionnaire was administered to parents/caregivers of a consecutive sample of 32 children with cerebral palsy attending a paediatric tertiary clinic in Auckland. Twenty-three children walked independently, 5 used walking aides and four used a wheelchair. Twenty-four of the 32 parent-respondents provided contextual feedback for their responses and wider issues relating to the topic. RESULTS: The barriers to participation most commonly reported by parents were attitudes at school (72%) and in the community (56%), difficulties accessing personal equipment (59%), and the natural environment and built surroundings (56%). Contextual information from families generally supported their answers to the questionnaire but highlighted that some parents had confused the 'not applicable' and 'never' options. Discrepancy between scores on the policy-related questions and later contextual feedback suggested that the policy subscale did not fully capture family concerns about limited availability of public funding for equipment, therapy, and educational support. CONCLUSIONS: The CHIEF instrument proved easy to use in a clinic setting. However, parent-respondent feedback highlighted the difficulties in interpreting responses to some items when the instrument is used in isolation to quantify environmental barriers to participation. The results highlight the need to develop research approaches and tools that can explore barriers to participation by children with cerebral palsy taking account of socio-economic and other relevant contextual information.

The sensitivity and specificity of an activity monitor in detecting functional activities in young people with cerebral palsy.

OBJECTIVE: To evaluate the sensitivity and specificity of the Intelligent Device for Energy Expenditure and Activity (IDEEA) monitor in detecting functional activities in young people with cerebral palsy (CP). DESIGN: Validation study. SETTING: Two identical data collections completed 1 week apart at a gait laboratory. PARTICIPANTS: Twenty-five young people with CP and 30 able-bodied (AB) peers (age 8-25 y; mean age CP 14.1 y, Gross Motor Function Classification System Level I-III; mean age AB, 14.2 y). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Each participant completed 5 functional activities (sitting, lying, standing, walking, and stairs), with the monitor attached. The sensitivity and specificity of the monitor in detecting each activity was calculated by comparison to a written timed report. RESULTS: Sitting, lying, and standing were detected with median 100% sensitivity in both participant groups and across both testing sessions. Accuracy of walking detection was reduced compared with static activities (P<.05) across the 2 sessions and groups. The CP group had a significantly higher number of participants where the activity was not detected with 100% sensitivity (lie: 18% CP, 5% AB, P<.04; stand: 12% CP, 0% AB, P<.02; walk: 96% CP, 81% AB, P<.03). Stair climbing was detected in only half of the 12 participants with CP who could achieve the task. The IDEEA demonstrated high specificity (range, 97%-100%) for both participant groups. CONCLUSIONS: The IDEEA activity monitor had high levels of sensitivity and specificity in determining everyday static activities in participants with CP, with greater difficulties in detecting dynamic activities of walking and stair climbing.

Reliability of upper and lower limb three-dimensional kinematics in children with hemiplegia.

The repeatability of both 3D kinematic measurements of arm movement during simple upper limb tasks and lower limb movement during gait analysis was evaluated in 10 children with hemiplegic cerebral palsy. All tasks were completed on two separate occasions, 1 week apart. The 3D lower limb gait analysis showed high levels of repeatability in the sagittal plane measures, with mean coefficient of multiple correlations (CMCs) greater than 0.92 between sessions. Transverse and frontal plane measures had mean CMCs greater than 0.7 between sessions. A 3D analysis of shoulder and elbow flexion/extension during the two functional tasks (hand to head and hand to mouth) was highly repeatable between sessions (mean CMCs, 0.87 to 0.95). Rotational measures at the shoulder and the elbow during the same tasks demonstrated moderate levels of inter-sessional repeatability (mean CMCs shoulder 0.49 to 0.63; elbow 0.63 to 0.74). Overall, the lower limb 3D kinematic analysis had similar levels of repeatability in both the hemiplegic limb and the limb with normal tone. The 3D kinematic analysis of movement of the hemiplegic upper limb during simple upper limb tasks also had moderate to good repeatability, suggesting it may be able to be used as an outcome measure in the hemiplegic upper limb.

Radiological outcome of reconstructive hip surgery in children with gross motor function classification system IV and V cerebral palsy.

Hip subluxation is common in children with cerebral palsy (CP). The aim of this study was to describe the radiological outcome of reconstructive hip surgery in children with CP, gross motor function classification system (GMFCS) level IV and V, and determine whether the GMFCS level plays a predictive role in outcome. This was a retrospective cohort study conducted at a tertiary-level pediatric hospital with a CP hip surveillance program. Of 110 children with GMFCS IV and V CP registered for hip surveillance, 45 underwent reconstructive hip surgery between 1997 and 2009, defined as varus derotational proximal femoral osteotomy with or without additional pelvic osteotomy. Eleven children were excluded because of lack of 12-month follow-up (n=10) or missing clinical records (n=1). Thus, 21 GMFCS IV children (median age 6 years at surgery) and 13 GMFCS V children (median age 5 years at surgery), who underwent 58 index surgeries, were included in the study. Clinical records and radiology were reviewed. The two surgical groups were femoral osteotomy (varus derotational femoral osteotomy with an AO blade plate or femoral locking plate fixation), or femoral ostetotomy with additional pelvic osteotomy. Reimer's migration percentage (MP) was calculated from anteroposterior pelvis radiographs to determine the outcome for each hip independently. Failure was defined as MP of greater than 60% or further operation on the hip. Reconstructive surgeries were performed for 58 hips with a median preoperative MP of 55%. There were 15 failures at a median of 62 months, including nine failures in 35 GMFCS IV hips and six failures in 23 GMFCS V hips. Overall, GMFCS V hips tended to fail earlier, (hazard ratio 2.3) with a median time to failure of 78 and 39 months for GMFCS IV and V hips, respectively. Combined femoral and pelvic osteotomies had the lowest failure rates in both groups of patients. The GMFCS classification may have some predictive value for outcomes following reconstructive hip surgery, with surgery for GMFCS V hips tending to fail earlier.

Walking drawings and walking ability in children with cerebral palsy.

OBJECTIVES: To investigate whether drawings of the self walking by children with cerebral palsy (CP) were associated with walking ability and illness perceptions. METHOD: This was an exploratory study in 52 children with CP (M:F = 28:24), mean age 11.1 years (range 5-18), who were attending tertiary level outpatient clinics. Children were asked to draw a picture of themselves walking. Drawing size and content was used to investigate associations with clinical walk tests and children's own perceptions of their CP assessed using a CP version of the Brief Illness Perception Questionnaire. RESULTS: Larger drawings of the self were associated with less distance traveled, higher emotional responses to CP, and lower perceptions of pain or discomfort, independent of age. A larger self-to-overall drawing height ratio was related to walking less distance. Drawings of the self confined within buildings and the absence of other figures were also associated with reduced walking ability. CONCLUSION: Drawing size and content can reflect walking ability, as well as symptom perceptions and distress. Drawings may be useful for clinicians to use with children with cerebral palsy to aid discussion about their condition.

Children's perceptions of their cerebral palsy and their impact on life satisfaction.

PURPOSE: To assess an individual child's cognitive and emotional perceptions of their cerebral palsy (CP) and how these are associated with their reported life satisfaction and their functional walking ability. METHOD: Convenience sample of 48 children with cerebral palsy, GMFCS (Gross Motor Function Classification System) I-IV, mean age of 12.2 ± 2.5 years was recruited from tertiary level out-patient clinics. All children completed the Brief Illness Perception Questionnaire-Cerebral Palsy version (BIPQ-CP), Students' Life Satisfaction Scale (SLSS) and 1- and 6-min walk tests. RESULTS: Children with CP reported levels of global life satisfaction (mean score 31.4/42) equivalent to previous studies of typically developing children. Higher total SLSS scores were associated with lower concern about CP (rho = -0.61, p < 0.001), lower emotional impact (rho = -0.58, p < 0.001), fewer perceived consequences (rho = -0.53, p < 0.001) and perceptions of higher levels of personal control (rho = 0.40, p = 0.01). Multiple regression models using BIPQ-CP constructs found that a combination of lower level of concern and fewer perceived consequences predicted 46% of the variance in SLSS score (p < 0.001). GMFCS levels, walk distance and age were not significant predictors of life satisfaction. CONCLUSIONS: Life satisfaction in this group of children was strongly associated with a child's perceptions of their CP but was not associated with functional walking ability. Although the cross-sectional nature of the study precludes assumptions of causality, understanding children's cognitive and emotional beliefs about their cerebral palsy would seem to be an important adjunct to clinical management.

Deficits in upper-limb task performance in children with hemiplegic cerebral palsy as defined by 3-dimensional kinematics.

OBJECTIVE: To define upper-limb movement deficits in children with hemiplegia using 3-dimensional (3-D) kinematic analysis of functional tasks. DESIGN: Cohort study. SETTING: University gait laboratory. PARTICIPANTS: Ten children with hemiplegic cerebral palsy (mean age, 13.3y; range, 10-17y) and 10 control children (mean age, 9.8y; range, 6-12y). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: 3-D upper-limb movement analysis. RESULTS: 3-D kinematics detected clinically significant between-group differences. Children with hemiplegia were significantly slower than control children in time taken to complete tasks (P<.05) and achieved slower movement velocities (P<.05). Group differences in range of motion (ROM) occurred in all 3 tasks examined (hand to mouth, hand to head, reach). Children with hemiplegia had significantly less supination (P<.03) and shoulder flexion (P<.03) and increased compensatory trunk flexion (P<.01) compared with control data (hand-to-mouth task). The reach task highlighted restriction of elbow extension in children with hemiplegia (minimum elbow extension: hemiplegia, 24+/-18 degrees ; control, 3+/-7 degrees ). Completing tasks bilaterally did not alter performance of the tasks in children with hemiplegia. CONCLUSIONS: 3-D kinematics detected deficits in timing, ROM, and proximal compensatory strategies during upper-limb functional task performance in children with hemiplegia.

The reliability and validity of assessment of sagittal plane deviations in children who have spastic diplegia.

OBJECTIVE: To assess the reliability and validity of a newly described classification of sagittal plane alignment in spastic diplegic gait. DESIGN: Twenty split-screen videos of children with spastic diplegia, Gross Motor Function Classification System levels I to III, were viewed on 2 occasions, 6 weeks apart, by 5 raters. The sagittal plane alignments of the right and left lower limbs in gait were classified separately as true equinus, jump knee, apparent equinus, or crouch, based on the published classification. A fifth category, nonclassifiable, was used if classification was not possible. We then used sagittal plane kinematic data to confirm the classification for each subject and these were compared with rater classification scores, which used the video information only. SETTING: Tertiary-level children's hospital. PARTICIPANTS: Three pediatric orthopedic surgeons and 2 pediatric orthopedic residents. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Gait classification scores derived from visual observation were compared among and within raters. The gait classification scores derived from visual observation were compared with the scores derived from sagittal plane kinematic data to assess validity. RESULTS: A moderate correlation was found among the 5 raters within each session, with an interrater weighted kappa score of .45 in session 1 and .49 in session 2. The intrarater, weighted kappa scores showed a moderate to substantial level of agreement between sessions, ranging from .50 to .68. The classification scores of individual raters had moderate validity when compared with classifications derived from the sagittal plane kinematic data. However, there was a substantial level of agreement between the consensus opinion and the classification obtained using the kinematic data as well as the video recordings (weighted kappa=0.8). CONCLUSIONS: This classification has only moderate reliability and validity when a single experienced rater views the 2-dimensional gait videos. However, the consensus opinion derived from the scores of 5 raters considerably improves the validity of the assessment.

Reliability and validity of the Observational Gait Scale in children with spastic diplegia.

The aim of this study was to establish the reliability and validity of visual gait assessment in children with spastic diplegia, who were community or household ambulators, using a modified version of the Physicians Rating Scale, known as the Observational Gait Scale (OGS). Two clinicians viewed edited split-screen video recordings of 20 children/adolescents (11 males, 9 females; mean age 12 years, range 6 to 21 years) made at the time of three-dimensional gait analysis (3-DGA). Walking ability in each child was scored at initial assessment and reassessed from the same videos three months later using the first seven sections of the OGS. Validity of the OGS score was determined by comparison with 3-DGA. The OGS was found to have acceptable interrater and intrarater reliability for knee and foot position in mid-stance, initial foot contact, and heel rise with weighted kappas (wk) ranging from 0.53 to 0.91 (intrarater) and 0.43 to 0.86 (interrater). Comparison with 3-DGA suggests that these sections might also have high validity(wk range 0.38-0.94). Base of support and hind foot position had lower interrater and intrarater reliabilities (wk 0.29 to 0.71 and wk 0.30 to 0.78 respectively) and were not easily validated by 3-DGA.

Intraobserver reliability of the modified Tardieu scale in the upper limb of children with hemiplegia.

This study investigated the reliability of the modified Tardieu scale in the assessment of biceps spasticity in the upper limbs of children with hemiplegic cerebral palsy (CP). Ten children, with hemiplegic CP participated in the study: six males (mean age 9 years, SD 4 years) and four females (mean age 12 years, SD 3 years). Blinded, duplicate measures of dynamic elbow extension were performed on the hemiplegic arm at time 0 and 7 days later, using the three angular velocities described in the Tardieu scale (V1, slow; V2, speed of gravity; V3, as fast as possible). The resulting elbow joint angles were defined as R1, the angle of catch following a fast velocity stretch at either V2 or V3; and R2, the passive range of movement achieved following a slow velocity stretch at V1. Both elbow joint angle and movement angular velocity were measured by three-dimensional kinematics. Median error in measured elbow joint angle within one session ranged from 3 to 5 degrees. Between sessions median absolute differences in measured elbow joint angle ranged from 4 to 13 degrees, with measurement errors of up to 25 to 30 degrees in some participants at the fastest velocity (V3). The therapist was able to apply three significantly different angular velocities as required for the Tardieu scale (p<0.001). However, the ranges of the three angular velocities overlapped, with fast velocities for some participants being equivalent to slow velocities for other participants. Three out of 10 participants had an intersessional difference in their R2-R1 score of more than 20 degrees. From this study, we concluded that the R2-R1 value determined from the modified Tardieu scale may be of limited value in assessing biceps spasticity the upper limbs in children with hemiplegic CP.