Longitudinal development of hand use in children with unilateral spastic cerebral palsy from 18 months to 18 years.

AIM: To describe the development of the use of the affected hand in bimanual tasks in children with unilateral cerebral palsy (CP) from 18 months to 18 years. Specifically, whether early development can be confirmed in a larger cohort and how development progresses during adolescence. METHOD: In total, 171 participants (95 males, 76 females; mean age 3 years 1 month [SD 3 years 8 months], range 18 months-16 years at inclusion) were classified in Manual Ability Classification System (MACS) levels I (n = 41), II (n = 91), and III (n = 39). Children were assessed repeatedly (median 7, range 2-16 times) with the Assisting Hand Assessment: in total 1197 assessments. Developmental trajectories were estimated using a nonlinear mixed effects model. To further analyse the adolescent period, a linear mixed model was applied. RESULTS: The developmental trajectories were different between participants in MACS levels (MACS I-II, II-III) in both rate (0.019, 95% confidence interval [CI] 0.006-0.031, p = 0.034; 0.025, 95% CI 0.015-0.037, p < 0.001) and limit (19.9, 95% CI 16.6-23.3, p = 0.001; 7.2, 95% CI 3.3-11.2, p < 0.003). The individual variations were large within each level. The developmental trajectories were stable over time for all MACS levels between 7 and 18 years (p > 0.05). INTERPRETATION: Children and adolescents with unilateral CP have considerable development at an early age and a stable ability to use their affected hand in bimanual activities from 7 to 18 years in all MACS levels.

Participation of children and young people with cerebral palsy in activities of daily living in rural Uganda.

AIM: To compare the participation attendance and involvement of children and young people with and without cerebral palsy (CP) in a low-resource area of Uganda. METHOD: Eighty-two children and young people with CP aged 6 to 22 years (49 males, 33 females) and 81 age- and sex-matched peers without CP (6 to 22 years; 48 males, 33 females) participated in this population-based, cross-sectional study. Data on attendance and involvement in 20 home and community activities were obtained using Picture My Participation, an instrument intended to measure participation in children with disabilities, particularly in low- and middle-income countries. Non-parametric statistical methods were used to assess between-group differences. Effect size estimates were calculated. RESULTS: Pooled attendance across all activities was lower in children and young people with CP than in children and young people without CP (p < 0.001) and for each activity item (p = 0.004 to p < 0.001). The effect sizes for each activity were 0.2 to 0.7. Between-group differences were larger for community activities than for home activities. Pooled involvement across all activities was less in the group with CP (p < 0.001) and for each activity (p = 0.014 to p < 0.001). The effect sizes for each activity were 0.2 to 0.5. Children and young people in Gross Motor Function Classification System (GMFCS) levels I and II had higher attendance (p < 0.001) and involvement (p = 0.023) than those in GMFCS levels III to V. INTERPRETATION: Participation of young people living with CP in Uganda was restricted, especially for community activities. There is a need to identify context-specific participation barriers and develop strategies to overcome them. WHAT THIS PAPER ADDS: Children and young people with cerebral palsy (CP) attended all activities less than their peers without CP. Differences in attendance were larger for community-based activities than home activities. When attending activities, children and young people with CP were less involved than their peers. Children and young people with milder impairments attended less frequently than their peers without CP. Children and young people with milder impairments attended more frequently than their peers with severe impairments.

Validity and test-retest reliability of the Ugandan version of the Pediatric Evaluation of Disability Inventory (PEDI-UG) in children and youth with cerebral palsy.

BACKGROUND: Validity of the Ugandan version of the Pediatric Evaluation of Disability Inventory (PEDI-UG) was previously investigated on typically developing children. This study aimed to investigate the validity, test-retest reliability and minimal detectable change (MDC) of the PEDI-UG in children and youth (C&Y) with cerebral palsy (CP). METHOD: A cross-sectional study design with 118 C&Y with CP (44.7% girls) aged 10 months-22.5 years were included in the study; 37 of them completed the PEDI-UG twice to investigate test-retest reliability, determined by calculating the intraclass correlation coefficient (ICC). Additionally, data from 249 typically developing children were used for differential item functioning (DIF) analysis. The validity of the PEDI-UG was investigated by Rasch analysis. The Kruskal-Wallis test and Spearman's correlation coefficient were calculated to investigate associations between PEDI-UG scores and external classification systems. RESULTS: The principal component analysis of residuals indicated unidimensionality in all domains. The ICC values were excellent (0.98-0.99), and the MDCs were less than 6 and 13 (on a 0-100 scale) for the functional skills and caregiver assistance parts, respectively. The four-category caregiver assistance rating scale fulfilled the criteria for the analysis of rating scale functioning. In total, 78 of 189 items in the functional skills domain and two items in the caregiver assistance domain demonstrated DIF between C&Y with CP and TD children. The Kruskal-Wallis test (p < 0.05) and Spearman's correlation (coefficients of -0.93 to -0.78) supported the validity of PEDI-UG. CONCLUSION: The current diagnose-specific version of PEDI-UG demonstrates evidence for validity as a measure of ability in C&Y with CP in Uganda and other similar settings, being a promising tool for use in clinical practice and research. Conversion tables and MDC values are provided to facilitate clinical adoption of the measure.

Functional development in children with cerebral palsy in Uganda: population-based longitudinal cohort study.

AIM: To follow the functional development of a population-based cohort of children with cerebral palsy (CP) in rural Uganda and compare their development with the developmental trajectories of children from high-income countries (HIC). METHOD: Eighty-one children (33 females, 48 males) aged 2 to 17 years (mean 8y 6mo, SD 4y 6mo) with CP were initially assessed in 2015 and then 4 years later using the 66-item Gross Motor Function Measure (GMFM-66), Pediatric Evaluation of Disability Inventory, Ugandan version (PEDI-UG), and functional classification systems. We calculated actual and reference scores (level of deviation from the developmental trajectories in HIC). A Wilcoxon signed-rank test was used for statistical analyses. RESULTS: Children and young people with CP in Uganda exhibited no differences in scores between the first and second assessments for the GMFM-66 and PEDI-UG mobility skills, whereas they exhibited increased PEDI-UG social function (p<0.001) and self-care skills scores (p<0.001). Reference scores were more negative at the second assessment than at the first for the GMFM-66 (p=0.002) and PEDI-UG mobility (p=0.036) but not for PEDI-UG self-care. The increased difference in reference scores over the 4 years was primarily driven by younger children (2-5y) and children with milder impairments. INTERPRETATION: The increased difference in reference scores between assessments suggests that children with CP in Uganda develop motor skills at a slower rate than peers in HIC. Limited access to health care and rehabilitation likely contributed to the lower scores and slower rate of development.

Interrater and test-retest reliability of the Hand Assessment for Infants.

AIM: To evaluate the interrater and test-retest reliability, standard error of measurement (SEM), and the smallest detectable difference (SDD) of the Hand Assessment for Infants (HAI). METHOD: HAI assessments of 55 infants (26 females, 29 males), 25 with clinical signs of unilateral cerebral palsy (CP) and 30 typically developing (mean [SD] age 6.8mo [2.4], range 3-11mo), were scored individually by three therapists. Three clinically experienced occupational therapists (OT 1-OT 3) with extensive experience in using the HAI, independently scored the video recorded HAI play sessions. Analysis of the combined group of infants and just the infants with clinical signs of unilateral CP (12 females, 13 males; mean age 7.6mo [2.1]) were conducted. Intraclass correlation coefficients (ICC, 2.1), Bland-Altman plots, SEM, and SDD were calculated. RESULTS: Interrater and test-retest reliability were excellent for the Both Hands Measure (BoHM) and the Each Hand Sum score (EaHS), with ICCs of 0.96 to 0.99. For individual items, the interrater and test-retest reliability was good to excellent (ICC 0.81-0.99). The SDD for the EaHS was 2 points, and for the BoHM the SDD it was 3 HAI units for infants with signs of unilateral CP. INTERPRETATION: The HAI results showed good to excellent reliability. The SDDs were low, indicating that results beyond these levels exceed the measurement error and, thus, can be considered true changes. What this study adds The Hand Assessment for Infants (HAI) shows excellent reliability. A change of ≥3 HAI units is considered a true change. The HAI yields reliable measures for research and clinical practice.

Predictive validity of the Hand Assessment for Infants in infants at risk of unilateral cerebral palsy.

AIM: To evaluate the sensitivity, specificity, and predictive value of the Hand Assessment for Infants (HAI) in identifying infants at risk of being diagnosed with unilateral cerebral palsy (CP), and to determine cut-off values for this purpose. METHOD: A convenience sample of 203 infants (106 females, 97 males) was assessed by the HAI at 3, 6, 9, and 12 months. Sensitivity, specificity, predictive values, and likelihood ratios were calculated using receiver operating characteristic curve analysis. Cut-off values were derived for different ages. The clinical outcome (unilateral CP yes/no) at 24 months or more served as an external criterion to investigate the predictive validity of HAI. RESULTS: Half of the infants developed unilateral CP. The area under the curve ranged from 0.77 (95% CI [confidence interval] 0.63-0.91) to 0.95 (95% CI 0.90-1.00) across HAI scales and age intervals. Likewise, sensitivity ranged from 63% to 93%, specificity from 62% to 91%, and accuracy from 73% to 94%. INTERPRETATION: HAI scores demonstrated overall accuracy that ranged from very good to excellent in predicting unilateral CP in infants at risk aged between 3.5 and 12 months. This accuracy increased with age at assessment and the earliest possible prediction was at 3.5 months of age, when appropriate HAI cut-off values for different ages were applied. What this paper adds The Hand Assessment for Infants (HAI) predicts unilateral cerebral palsy (CP) with high accuracy. HAI cut-off values can guide clinical practice for early identification and diagnosis of unilateral CP.

Impairments, functional limitations, and access to services and education for children with cerebral palsy in Uganda: a population-based study.

AIM: To describe the functional limitations and associated impairments of children with cerebral palsy (CP) in rural Uganda, and care-seeking behaviour and access to assistive devices and education. METHOD: Ninety-seven children with CP (42 females, 55 males; age range 2-17y) were identified in a three-stage population-based screening with subsequent medical examinations and functional assessments. Information on school and access to care was collected using questionnaires. The data were compared with Swedish and Australian cohorts of children with CP. We used the χ2 test and linear regression models to analyse differences between groups. RESULTS: Younger children were more severely impaired than older children. Two-fifths of the children had severe impairments in communication, about half had intellectual disability, and one third had seizures. Of 37 non-walking children, three had wheelchairs and none had walkers. No children had assistive devices for hearing, seeing, or communication. Care-seeking was low relating to lack of knowledge, insufficient finances, and 'lost hope'. One-third of the children attended school. Ugandan children exhibited lower developmental trajectories of mobility and self-care than a Swedish cohort. INTERPRETATION: The needs for children with CP in rural Uganda are not met, illustrated by low care-seeking, low access to assistive devices, and low school attendance. A lack of rehabilitation and stimulation probably contribute to the poor development of mobility and self-care skills. There is a need to develop and enhance locally available and affordable interventions for children with CP in Uganda. WHAT THIS PAPER ADDS: Development of mobility and self-care skills is lower in Ugandan than Swedish children with cerebral palsy (CP). Older children in Uganda with CP are less impaired than younger children. Untreated seizures and impairments of communication and intellect are common. Access to health services, assistive devices, and education is low. Caregivers lack knowledge and finances to seek care and often lose hope of their child improving.

Development of hand function during the first year of life in children with unilateral cerebral palsy.

AIM: To identify developmental trajectories of hand function in infants aged 3 months to 12 months with unilateral cerebral palsy (CP). METHOD: Infants at high risk of unilateral CP were recruited from 3 months of age from follow-up programmes and clinics in Sweden, the Netherlands, Italy, and Australia. Measurements on the Hand Assessment for Infants (HAI) were completed until 12 months of age. Group-based trajectory modelling was used to identify subgroups of infants with similar trajectories of development. Multinomial logistic regression determined associations between demographic variables and trajectory membership. RESULTS: Ninety-seven infants (52 males, 45 females; median gestational age 38wks [interquartile range 30-40wks]) were included. Infants were assessed between two and seven times (mean 4, SD 1.2) with a total of 387 observations. A three-group trajectory model identified a 'low-functioning group' (n=45: 46%), 'moderate-functioning group' (n=30: 31%), and 'high-functioning group' (n=22: 23%). Mean posterior probabilities (0.91-0.96) and odds of correct classification (26.3-33.2) indicated good model fit. Type of brain lesion, sex, side of hemiplegia, country, gestational age, and access to intensive intervention were not associated with group membership. INTERPRETATION: Three trajectories of hand function development for infants with unilateral CP were identified and indicate some greater distinctions between groups with increasing age. The HAI is a valuable measure, capturing development of hand function of infants with unilateral CP over time. WHAT THIS PAPER ADDS: Three distinct developmental trajectories of hand function in infants with unilateral cerebral palsy were identified. A low-functioning group made little progress in development of hand function in the first year of life. The degree of impairment on the impaired hand at 6 months of age is highly associated with trajectory membership. Infants with all types of brain lesion were represented across each trajectory group.

Hand Assessment for Infants: normative reference values.

AIM: To create normative reference values for unilateral and bilateral use of the hands, using the Hand Assessment for Infants (HAI), a newly developed criterion-referenced assessment measuring hand use in infants aged 3 months to 12 months at risk of cerebral palsy (CP). METHOD: In total, 489 HAI assessments of typically developing infants (243 females, 246 males), aged 3 months to 10 months (mean 6mo 14d [SD 2mo 5d]), were collected in Italy and Sweden. Normative growth curves based on mean and SDs were created, as well as skill acquisition curves for each test item. Correlation to age and differences between groups based on sex and nationality, as well as differences between the right and the left hand, were investigated. RESULTS: The growth curves showed a steady increase in mean value and a decrease in SD over age. There were no differences between groups based on sex or nationality. There was a negligible mean difference (0.1 raw score) between the right and left hands. INTERPRETATION: HAI normative reference values are now available, which can assist in identifying deviating hand use for each month of age, as well as a side difference between hands in infants at risk of CP. WHAT THIS PAPER ADDS: A Hand Assessment for Infants (HAI) result greater than 2SD below the mean indicates atypical hand use. Skill acquisition curves describe the age at which typically developing infants master the HAI items. Most typically developing infants do not demonstrate asymmetry in hand use.

EVALUACIÓN DE LA FUNCIÓN DE LA MANO PARA BEBÉS (HAI): VALORES NORMATIVOS DE REFERENCIA: OBJETIVO: Para crear valores de referencia normativos para el uso unilateral y bilateral de las manos, utilizando la Evaluación de la Mano para Infantes (HAI), una evaluación recientemente desarrollada basada en criterios que mide el uso de las manos en lactantes de 3 a 12 meses con riesgo de parálisis cerebral (PC). MÉTODO: En total, se recolectaron 489 evaluaciones usando el HAI de bebés con desarrollo típico (243 femeninos, 246 masculinos), de 3 a 10 meses (media 6 meses 14 días [DS 2 meses 5 días]), en Italia y Suecia. Se crearon curvas de crecimiento normativas basadas en la media y las desviaciones estándar, así como curvas de adquisición de habilidades para cada elemento de prueba. Se investigó la correlación con la edad y las diferencias entre grupos según el sexo y la nacionalidad, así como las diferencias entre la mano derecha y la mano izquierda. RESULTADOS: Las curvas de crecimiento mostraron un aumento constante en el valor medio y una disminución en el DE a lo largo de la edad. No hubo diferencias entre grupos por sexo o nacionalidad. Hubo una diferencia de medias insignificante (puntaje bruto de 0,1) entre las manos derecha e izquierda. INTERPRETACIÓN: Este estudio aporta los valores de referencia normativos de HAI, los cuales están disponibles, lo que puede ayudar a identificar la función de las manos que se desvía de los parámetros considerados como normales para cada mes de edad, así como una diferencia lateral entre las manos de los bebés en riesgo de PC.

AVALIAÇÃO DA MÃO PARA LACTENTES (AML): VALORES NORMATIVOS DE REFERÊNCIA: OBJETIVO: Criar valores normativos de referência para uso unilateral e bilateral das mãos, usando a Avaliação da mão para lactentes (AML), uma avaliação baseada em critérios que foi desenvolvida recentemente para mensurar o uso da mão em lactentes de 3 a 12 anos em risco para paralisia cerebral (PC). MÉTODO: No total, 489 avaliações da AML de lactentes com desenvolvimento típico (243 do sexo feminino, 246 do sexo masculino), com idades de 3 a 10 meses (média 6m 14d [DP 2m 5]), foram coletadas na Itália e na Suécia. Curvas normativas de crescimento baseadas em médias e desvios padrão foram criadas, assim como curvas de aquisição de habilidades para cada item do teste. Correlação com a idade e diferenças entre grupos baseadas no sexo e na nacionalidade, assim como diferenças entre mão direita e esquerda, foram investigadas. RESULTADOS As curvas de crescimento mostraram aumento contínuo na média e diminuição no DP com a idade. Não houve diferenças enter grupos com base no sexo ou nacionalidade. Houve uma diferença média inexpressiva (0,1 escore bruto) entre mãos direita e esquerda. INTERPRETAÇÃO: Valores normativos de referência da AML agora estão disponíveis, o que pode ajudar a identificar o uso anormal da mão para cada mês de vida, assim como diferenças entre lados em lactentes em risco para PC.

To Explore the Validity of Change Scores of the Children's Hand-use Experience Questionnaire (CHEQ) in Children with Unilateral Cerebral Palsy.

AIMS: To explore the validity of change scores of the Children's Hand-use Experience Questionnaire (CHEQ). METHODS: Analysis of the CHEQ included 44 children (15 girls) between 6-16 years (median 9.0; IQR 8-11) with unilateral cerebral palsy, with baseline and post- (two-week intensive) intervention assessments using the Goal Attainment Scale (GAS) as external anchor for change. Hypotheses on the magnitude of expected change were formulated and correlation coefficients and effect sizes calculated. Receiver operating curve analysis was performed and the area under the curve (AUC) calculated to investigate the ability of CHEQ to discriminate between improvement and non-improvement according to GAS. RESULTS: All hypotheses about the magnitude of change were confirmed supporting longitudinal validity of CHEQ scales to measure change in the perception of bimanual performance. AUCs for the Grasp efficacy and the Time utilization were slightly below, and for the Feeling bothered slightly above the threshold. The latter one accurately discriminating between children that improved and did not improve according to the GAS. CONCLUSIONS: Evidence was found that CHEQ scales capture change in bimanual performance but with limited accuracy for two out of three scales. The validity of CHEQ change scores needs to be further explored in a wider population.

Mini-MACS: development of the Manual Ability Classification System for children younger than 4 years of age with signs of cerebral palsy.

AIM: To develop the Mini-Manual Ability Classification System (Mini-MACS) and to evaluate the extent to which its ratings are valid and reliable when children younger than 4 years are rated by their parents and therapists. METHOD: The Mini-MACS was created by making adjustments to the MACS. The development involved a pilot project, consensus discussions within an expert group, and the creation of a test version of the Mini-MACS that was evaluated for content validity and interrater reliability. A convenience sample of 61 children with signs of cerebral palsy aged 12 to 51 months (mean age 30.2mo [SD 10.1]) were classified by one parent and two occupational therapists across a total of 64 assessments. Agreement between the parents' and therapists' ratings was evaluated using the intraclass correlation coefficient (ICC) and the percentage of agreement. RESULTS: The first sentence of the five levels in the MACS was kept, but other descriptions within the Mini-MACS were adjusted to be more relevant for the younger age group. The ICC between parents and therapists was 0.90 (95% confidence interval [CI] 0.79-0.92), and for the two therapists it was 0.97 (95% CI 0.78-0.92). Most parents and therapists found the descriptions in the Mini-MACS suitable and easy to understand. INTERPRETATION: The Mini-MACS seems applicable for children from 1 to 4 years of age.

Development of the Hand Assessment for Infants: evidence of internal scale validity.

AIM: The aim of this study was to develop a descriptive and evaluative assessment of upper limb function for infants aged 3 to 12 months and to investigate its internal scale validity for use with infants at risk of unilateral cerebral palsy. METHOD: The concepts of the test items and scoring criteria were developed. Internal scale validity and aspects of reliability were investigated on the basis of 156 assessments of infants at 3 to 12 months corrected age (mean 7.2mo, SD 2.5) with signs of asymmetric hand use. Rasch measurement model analysis and non-parametric statistics were used. RESULTS: The new test, the Hand Assessment for Infants (HAI), consists of 12 unimanual and five bimanual items, each scored on a 3-point rating scale. It demonstrated a unidimensional construct and good fit to the Rasch model requirements. The excellent person reliability enabled person separation to six significant ability strata. The HAI produced an interval-level measure of bilateral hand use as well as unimanual scores of each hand, allowing a quantification of possible asymmetry expressed as an asymmetry index. INTERPRETATION: The HAI can be considered a valid assessment tool for measuring bilateral hand use and quantifying side difference between hands among infants at risk of developing unilateral cerebral palsy. WHAT THIS PAPER ADDS: The Hand Assessment for Infants (HAI) measures the use of both hands and quantifies a possible asymmetry of hand use. HAI is valid for infants at 3 to 12 months corrected age at risk of unilateral cerebral palsy.

Assisting Hand Assessment and Children's Hand-Use Experience Questionnaire -Observed Versus Perceived Bimanual Performance in Children with Unilateral Cerebral Palsy.

AIMS: To explore the differences, relationship, and extent of agreement between the Assisting Hand Assessment (AHA), measuring observed ability to perform bimanual tasks, and the Children's Hand-Use Experience Questionnaire (CHEQ), assessing experienced bimanual performance. METHODS: This study investigates a convenience sample of 34 children (16 girls) with unilateral cerebral palsy aged 6-18 years (mean 12.1, SD 3.9) in a cross-sectional design. RESULTS: The AHA and CHEQ subscales share 8-25% of their variance (R2). Bland-Altman plots for AHA and all three CHEQ subscales indicate good average agreement, with a mean difference approaching zero but large 95% confidence intervals. Limits of agreement were extremely wide, indicating considerable disagreement between AHA and CHEQ subscales. CONCLUSION: AHA and CHEQ seem to measure different though somewhat related constructs of bimanual performance. Results of this investigation reinforce the recommendation to use both instruments to obtain complementary information about bimanual performance including observed and perceived performance of children with unilateral cerebral palsy.

Longitudinal development of hand function in children with unilateral spastic cerebral palsy aged 18 months to 12 years.

AIM: The aim of the study was to describe the development of hand function, particularly the use of the affected hand in bimanual tasks, among children with unilateral cerebral palsy aged 18 months to 12 years. METHOD: A convenience sample of 96 children (53 males, 43 females) was assessed with the Assisting Hand Assessment (AHA) at regular intervals from the ages of 18 months to 12 years. The children ranged from 17 to 127 months (median age 24mo) at recruitment. Subgroups were created to identify differences in development using the child's AHA at 18 months and the Manual Ability Classification System (MACS). A nonlinear mixed effects model was used to analyze data according to a 'stable limit' development model. RESULTS: The results were based on 702 AHA sessions. The children showed a rapid development at a young age and reached 90% of their stable limit between 30 months and 8 years. The subgroups, based on the 18-month AHA and the MACS levels respectively, had distinctly different patterns of development. INTERPRETATION: The AHA at 18 months may be used to make a crude prediction of future development.

Validity and test-retest reliability of Children's Hand-use Experience Questionnaire in children with unilateral cerebral palsy.

AIM: To investigate the validity of the internet-based version of the Children's Hand-use Experience Questionnaire (CHEQ) by testing the new four-category rating scale, internal structure, and test-retest reliability. METHOD: Data were collected for 242 children with unilateral cerebral palsy (CP) (137 males and 105 females; mean age 9y 10mo, SD 3y 5mo, range 6-18y). Twenty children from the study sample (mean age 11y 8mo, SD 3y 10mo) participated in a retest within 7 to 14 days. Validity was tested by Rasch analysis based on a rating scale model and test-retest reliability by Kappa analysis and intraclass correlation coefficient (ICC). RESULTS: The four-category rating scale was within recommended criteria for rating scale structure. One item was removed because of misfit. CHEQ showed good scale structure according to the criteria. The effective operational range was >90% for two of the CHEQ scales. Test-retest reliability for the three CHEQ scales was: grasp efficacy, ICC=0.91; time taken, ICC=0.88; and feeling bothered, ICC=0.91. INTERPRETATION: The internet-based CHEQ with a four-category rating scale is valid and reliable for use in children with unilateral CP. Further studies are needed to investigate the validity of the internet-based version of CHEQ for children with upper limb reduction deficiency or obstetric brachial plexus palsy and the validity of the recommended improvements to the current version.

Can children identify and achieve goals for intervention? A randomized trial comparing two goal-setting approaches.

AIM: The efficacy of two different goal-setting approaches (children's self-identified goals and goals identified by parents) were compared on a goal-directed, task-oriented intervention. METHOD: In this assessor-blinded parallel randomized trial, 34 children with disabilities (13 males, 21 females; mean age 9y, SD 1y 4mo) were randomized using concealed allocation to one of two 8-week, goal-directed, task-oriented intervention groups with different goal-setting approaches: (1) children's self-identified goals (n=18) using the Perceived Efficacy and Goal-Setting System, or (2) goals identified by parents (n=16) using the Canadian Occupational Performance Measure (COPM). Participants were recruited through eight paediatric rehabilitation centres and randomized between October 2011 and May 2013. The primary outcome measure was the Goal Attainment Scaling and the secondary measure, the COPM performance scale (COPM-P). Data were collected pre- and post-intervention and at the 5-month follow-up. RESULTS: There was no evidence of a difference in mean characteristics at baseline between groups. There was evidence of an increase in mean goal attainment (mean T score) in both groups after intervention (child-goal group: estimated mean difference [EMD] 27.84, 95% CI 22.93-32.76; parent-goal group: EMD 21.42, 95% CI 16.16-26.67). There was no evidence of a difference in the mean T scores post-intervention between the two groups (EMD 6.42, 95% CI -0.80 to 13.65). These results were sustained at the 5-month follow-up. INTERPRETATION: Children's self-identified goals are achievable to the same extent as parent-identified goals and remain stable over time. Thus children can be trusted to identify their own goals for intervention, thereby influencing their involvement in their intervention programmes.

Efficacy of the small step program in a randomised controlled trial for infants below age 12 months with clinical signs of CP; a study protocol.

BACKGROUND: Children with cerebral palsy (CP) have life-long motor disorders, and they are typically subjected to extensive treatment throughout their childhood. Despite this, there is a lack of evidence supporting the effectiveness of early interventions aiming at improving motor function, activity, and participation in daily life. The study will evaluate the effectiveness of the newly developed Small Step Program, which is introduced to children at risk of developing CP during their first year of life. The intervention is based upon theories of early learning-induced brain plasticity and comprises important components of evidence-based intervention approaches used with older children with CP. METHOD AND DESIGN: A two-group randomised control trial will be conducted. Invited infants at risk of developing CP due to a neonatal event affecting the brain will be randomised to either the Small Step Program or to usual care. They will be recruited from Astrid Lindgren Children's Hospital at regular check-up and included at age 3-8 months. The Small Step Program was designed to provide individualized, goal directed, and intensive intervention focusing on hand use, mobility, and communication in the child's own home environment and carried out by their parents who have been trained and coached by therapists. The primary endpoint will be approximately 35 weeks after the start of the intervention, and the secondary endpoint will be at 2 years of age. The primary outcome measure will be the Peabody Developmental Motor Scale (second edition). Secondary assessments will measure and describe the children's general and specific development and brain pathology. In addition, the parents' perspective of the program will be evaluated. General linear models will be used to compare outcomes between groups. DISCUSSION: This paper presents the background and rationale for developing the Small-Step Program and the design and protocol of a randomized controlled trial. The aim of the Small Step Program is to influence development by enabling children to function on a higher level than if not treated by the program and to evaluate whether the program will affect parent's ability to cope with stress and anxiety related to having a child at risk of developing CP. TRIAL REGISTRATION: ClinicalTrials.gov Identifier NCT02166801 . Registered June 12, 2014.

Grey matter brain injuries are common in Ugandan children with cerebral palsy suggesting a perinatal aetiology in full-term infants.

AIM: There is limited literature on brain imaging studies of children with cerebral palsy (CP) in low and middle income countries. We investigated neuroimaging patterns of children with CP attending a tertiary referral centre in Uganda to determine how they differed from studies reported from high income countries and their relationship with prenatal and postnatal factors. METHODS: Precontrast and postcontrast computed tomography (CT) scans of 78 CP children aged 2-12 years were conducted using a Philips MX 16-slice CT scanner. Two radiologists, blinded to the patient's clinical status, independently reviewed the scans. RESULTS: Abnormal CT scans were detected in 69% of the children sampled, with very few having primary white matter injuries (4%). Primary grey matter injuries (PGMI) (44%) and normal scans (31%) were most frequent. Children with a history of hospital admission following birth were three times more likely to have PGMI (odds ratio [OR] 2.8; 95% CI 1.1-7.1), suggesting a perinatal period with medical complications. CONCLUSION: Brain imaging patterns in this group of CP children differed markedly from imaging studies reported from high income countries, suggesting a perinatal aetiology in full-term infants and reduced survival in preterm infants.

The influence of early modified constraint-induced movement therapy training on the longitudinal development of hand function in children with unilateral cerebral palsy.

AIM: There is evidence that modified constraint-induced movement therapy (mCIMT) has a short-term positive effect on hand function in children with unilateral cerebral palsy (CP), but the long-term effect is unknown. The aim of this study was to investigate whether or not a single block of mCIMT (2h/d for 2mo) at age 2 to 3 years influences the course of development of bimanual hand function at around 8 years of age. METHOD: A convenience sample of 45 children (24 males, 21 females) with unilateral CP and mean (SD) age at first assessment 32 months (13mo) was included in this study. The participants were divided into the mCIMT group (n=26) and the reference group (no mCIMT; n=19). Brain lesion characteristics were available for 32 children. The children were measured repeatedly with the Assisting Hand Assessment (AHA) for a mean period of 4 years and 6 months. Development curves were created and compared with a non-linear mixed effects model. RESULTS: Children who were receiving mCIMT had an upper limit of development of bimanual hand function that was 8.5 AHA units higher than in the reference group (p=0.022). However, when controlling for brain lesion characteristics and baseline in a subgroup of 32 children, the difference was considerably smaller and no longer significant. CONCLUSION: mCIMT may have a positive impact on long-term development of bimanual hand function, but the results are inconclusive and further research is necessary.

What assessments evaluate use of hands in infants? A literature review.

AIM: To identify assessments, applicable to infants aged 3 months to 12 months, measuring hand function, and to discuss their usefulness in assessing infants at risk of developing unilateral cerebral palsy (CP). METHOD: Instruments described in two previous systematic reviews were scrutinized for inclusion of fine motor components. Additionally, a new literature search was performed in Medline, PsychInfo, PubMed, and Cinahl (2007-2013) to identify newly developed assessments of infant motor functioning. RESULTS: Five assessments from the two previous systematic reviews included fine motor components but only three provided separate measures of fine motor performance: the Peabody Developmental Motor Scales--version 2 (PDMS-2), the Bayley Scale of Infant and Toddler Development--version III, and the Posture and Fine Motor Assessment of Infants, each of which provided measures of the preferred hand only. From 531 papers retrieved, 10 new assessments were found, three of which met our inclusion criteria: the Infant Motor Profile (IMP), the Grasping and Reaching Assessment of Brisbane (GRAB), and the Hand Assessment for Infants (HAI). Only the GRAB and the HAI provide measures relevant for assessing infants at risk of developing unilateral cerebral palsy; however, both measures are still under construction. INTERPRETATION: No currently available assessment for infants aged 3 to 12 months old measures aspects of hand function suitable for quantifying asymmetry between hands or quality of bimanual performance.