The Assisting Hand Assessment (AHA) provides a new perspective of hand function evaluation relevant for children with unilateral upper limb disabilities. It measures how effectively the involved hand ...is actually used for bimanual activity, which, for these children, might be the most important aspect of their hand function. The aim of this paper is to report the conceptual framework and the evidence for validity, reliability, and responsiveness to change for the measures. Previously, the AHA has been evaluated for children aged 18 months to 5 years and excellent inter‐ and intrarater reliability was demonstrated. This paper reports further evidence of construct validity and reliability for the AHA measures involving an extended age range of children with hemiplegic cerebral palsy or obstetric brachial plexus palsy from 18 months to 12 years of age (mean age 4y 11mo SD 2y 9mo range 18mo–12y 8mo). A Rasch measurement model was used to analyze 409 assessments from 303 children (170 males, 133 females). The analysis generated a scale demonstrating large capacity to reliably separate and spread personal ability measures, indicating sensitivity to change and a hierarchy of the items ranging them from easy to hard. Aspects of item fit, relationship between age and ability measures, and development of assisting hand function are discussed.
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.
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.
What this paper adds
The Mini‐Manual Ability Classification System (Mini‐MACS) can be used for children between 1 year and 4 years of age with signs of cerebral palsy.
The Mini‐MACS shows evidence of validity and reliability when used both by parents and by therapists.
This article is commented on by Jeevanantham on page 11 of this issue.
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.
This original article is commented by Tann on page 11 of this issue.
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.
What this paper adds
Children's self‐identified goals are achievable to the same extent as parent‐established goals.
Children choose goals that are varied and involve achievements that improve self‐care and participation with peers in leisure and schoolwork.
This article is commented on by Foley on pages 533–534 of this issue.
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.
What this paper adds
Development occurs rapidly, but to different extents, during the first years of life and shows a more stable profile up to age 12 years for many children.
Assisting Hand Assessment conducted at 18 months may be used to support discussion on future hand function in children with unilateral cerebral palsy.
This article is commented on by Hanna on pages 997–998 of this issue.
Few population-based studies of cerebral palsy have been done in low-income and middle-income countries. We aimed to examine cerebral palsy prevalence and subtypes, functional impairments, and ...presumed time of injury in children in Uganda.
In this population-based study, we used a nested, three-stage, cross-sectional method (Iganga-Mayuge Health and Demographic Surveillance System HDSS) to screen for cerebral palsy in children aged 2–17 years in a rural eastern Uganda district. A specialist team confirmed the diagnosis and determined the subtype, motor function (according to the Gross Motor Function Classification System GMFCS), and possible time of brain injury for each child. Triangulation and interviews with key village informants were used to identify additional cases of suspected cerebral palsy. We estimated crude and adjusted cerebral palsy prevalence. We did χ2 analyses to examine differences between the group screened at stage 1 and the entire population and regression analyses to investigate associations between the number of cases and age, GMFCS level, subtype, and time of injury.
We used data from the March 1, 2015, to June 30, 2015, surveillance round of the Iganga-Mayuge HDSS. 31 756 children were screened for cerebral palsy, which was confirmed in 86 (19%) of 442 children who screened positive in the first screening stage. The crude cerebral palsy prevalence was 2·7 (95% CI 2·2–3·3) per 1000 children, and prevalence increased to 2·9 (2·4–3·6) per 1000 children after adjustment for attrition. The prevalence was lower in older (8–17 years) than in younger (<8 years) children. Triangulation added 11 children to the cohort. Spastic unilateral cerebral palsy was the most common subtype (45 46% of 97 children) followed by bilateral cerebral palsy (39 40% of 97 children). 14 (27%) of 51 children aged 2–7 years had severe cerebral palsy (GMFCS levels 4–5) compared with only five (12%) of 42 children aged 8–17 years. Few children (two 2% of 97) diagnosed with cerebral palsy were born preterm. Post-neonatal events were the probable cause of cerebral palsy in 24 (25%) of 97 children.
Cerebral palsy prevalence was higher in rural Uganda than in high-income countries (HICs), where prevalence is about 1·8–2·3 cases per 1000 children. Children younger than 8 years were more likely to have severe cerebral palsy than older children. Fewer older children than younger children with cerebral palsy suggested a high mortality in severely affected children. The small number of preterm-born children probably resulted from low preterm survival. About five times more children with post-neonatal cerebral palsy in Uganda than in HICs suggested that cerebral malaria and seizures were prevalent risk factors in this population.
Swedish Research Council, Promobilia.
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.
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.
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 this paper adds
A single block of modified constraint‐induced movement therapy (mCMIT) does not seem to be enough to change the developmental limit of hand function.
Type of brain lesion seems to have a stronger influence on this development than a single block of mCIMT.
This article is commented on by Hoare on pages 12–13 of this issue.
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.
Resumen
Desarrollo de la función manual durante el primer año de vida en niños con parálisis cerebral unilateral
Objetivo
Identificar la trayectoria del desarrollo de la función manual en niños de 3 a 12 meses con parálisis cerebral unilateral (PC).
Metodo
Fueron evaluados niños con alto riesgo de PC unilateral desde los 3 meses de edad en programas de seguimiento en clínicas en Suecia, Países Bajos, Italia y Australia. Las mediciones con la Hand Assessment for Infants (HAI) fueron completadas hasta los 12 meses de edad. Se utilizó la trayectoria modelada de un grupo basal para identificar subgrupos de niños con similar trayectoria de desarrollo. La regresión logística multinomial determinó las asociaciones entre las variables demográficas y la pertenencia a la trayectoria.
Resultados
Noventa y siete niños (52 masculinos, 45 femeninos; edad gestacional media 38 semanas rango 30–40 semanas) fueron incluidos. Los niños fueron evaluados entre dos y siete veces (media 4, SD 1,2) con un total de 387 observaciones. Un modelo de trayectoria de tres grupos identificó un¨ grupo de bajo funcionamiento¨(n=45: 46%), un ¨grupo de moderado funcionamiento¨ (n=30: 31%), y un ¨grupo de alto funcionamiento¨ (n=22: 23%). La probabilidad media posterior (0,91–0,96) y las probabilidades de clasificación correcta (26,3–33,2) indicaron un buen ajuste del modelo. El tipo de lesión cerebral, sexo, localización de la hemiplejía, país, edad gestacional y el acceso a la intervención no fue asociado a la membresía del grupo.
Interpretacion
En niños con PC unilateral fueron identificados tres trayectorias del desarrollo de la función manual, los cuales indicaron mayor distinción entre los grupos a mayor edad. El HAI es una medida valiosa, capturando el desarrollo de la función manual de los niños con PC bilateral en el tiempo.
Resumo
Desenvolvimento da função manual durante o primeiro ano de vida em crianças com paralisia cerebral unilateral
Objetivo
Identificar trajetórias de desenvolvimento da função manual em lactentes com idade entre 3 e 12 meses com paralisia cerebral unilateral.
Métodos
Lactentes com alto risco para paralisia cerebral unilateral foram recrutadas aos 3 meses de idade em programas de follow‐up e clínicas na Suécia, Países Baixos, Itália e Austrália. Medidas da Avaliação manual para lactentes (AML) foram realizadas até os 12 meses de idade. A modelagem de trajetória baseada em grupos foi usada para identificar subgrupos de lactentes com trajetórias similares de desenvolvimento. Uma regressão logística multinomial determinou associações entre variáveis demográficas e a trajetória utilizada.
Resultados
Noventa e sete lactentes (52 do sexo masculino e 45 do sexo feminino; mediana da idade gestacional de 38 semanas intervalo interquartil 30‐40 semanas) foram incluídos. Os lactentes foram avaliados entre duas e sete vezes (média 4, DP 1,2) com um total de 387 observações. Um modelo de trajetória de três grupos identificou um ‘grupo de baixa função’ (n= 45: 46%), ‘grupo de moderada função’ (n=30: 31%) e ‘grupo de alta função’ (n=22: 23%). Probabilidades posteriores médias (0,91‐0,96) e chances de classificação correta (26,3‐33,2) indicaram bom ajuste do modelo. O tipo de lesão cerebral, sexo, lado da hemiplegia, país, idade gestacional e acesso a intervenção não foram associados a participação no grupo.
Interpretação
Três trajetórias de desenvolvimento de função manual para lactentes com paralisia cerebral unilateral foram identificados e demonstram maiores diferenças entre os grupos com o aumento da idade. A AML é uma medida valiosa, capturando o desenvolvimento da função manual em lactentes com paralisia cerebral unilateral ao longo do tempo.
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.
This article is commented on by Holmefur on page 507 of this issue.
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