Parents' experiences of participating in the Small Step early intervention program for infants at high risk of cerebral palsy: essential components and potential dilemmas.

MATERIALS AND METHODS: Thirteen parents (eight mothers and five fathers) of ten children participated in this qualitative study through individual in-depth interviews. Transcripts were analysed using reflexive thematic analysis. RESULTS: The parents emphasized the advantage of having the intervention provided at home with coaching and flexible support from the interprofessional team of therapists. This assured the families and enhanced their capacity to provide the child with playful and enriched learning opportunities integrated in everyday life. However, identification of achievable goals and intervention delivery could be emotionally taxing for parents, especially in the early stages and if treatment effects were below hopes and expectations. CONCLUSIONS: Our findings provide insights into what kind of support parents prefer and dilemmas professionals should be aware of when providing early intervention to families of infants at high risk of CP. Parents appreciated being involved as equal partners and receiving home-based guidance. Acknowledging grief and sorrow as natural reactions and fostering open discussions about expectations seem essential in addressing families' individual needs.

Guidance on how to integrate playful training in everyday life at home is crucial in reducing family stress and empower parents.In collaborative goalsetting, therapists should explore parents' hopes and expectations and provide guidance on possible realistic short-term goals.Therapists should be aware that participating in early intervention can be emotionally challenging and acknowledge grief and sorrow as natural reactions.

Outcomes of a Parent-Delivered Baby-mCIMT Model for Infants at High Risk of Unilateral Cerebral Palsy Using Remote Coaching in Telerehabilitation.

There is growing evidence of the positive effects of constraint-induced movement therapy (CIMT) for infants at high risk of unilateral cerebral palsy (UCP) when provided by parents with in-person coaching/supervision from occupational therapists during home visits. The aim of this study is to investigate whether Baby-mCIMT (modifiedCIMT) can be as effective if parents are coached/supervised remotely. In this case-control study, we recruited 20 infants and re-used 18 controls, 4-8-month-old infants in both groups at high risk of UCP. The same protocol regarding inclusion criteria, data collection, and training volume was used in both groups. The training was conducted for two 6-week periods, separated by a 6-week break, consisting of daily 30 min sessions conducted by parents, supported by therapist coaching once a week. The primary outcome was measured using the Hand Assessment for Infants (HAI). There was no difference in the change of HAI units (p = 0.803) or that of the affected-hand raw score (p = 0.942) between the two groups. The remote coaching method was well received by parents. In conclusion, this demonstrates that remote coaching/supervision is as effective as the in-person approach, requiring less time and effort for both families and healthcare providers.

Development of Hand Use with and Without Intensive Training Among Children with Unilateral Cerebral Palsy in Scandinavia.

AIM: To describe hand use development in children with unilateral cerebral palsy who did/did not participate in constraint-induced movement therapy (CIMT) before 7 years of age. METHOD: The study included 334 participants (18 months-12 years) who were assessed with 1,565 Assisting Hand Assessments (AHAs) and categorized into no intensive training (NIT), CIMT (18 months-7 years), and Baby-CIMT (<18 months) groups. RESULTS: AHA performance at 18 months (AHA-18) was positively associated with development regardless of training. The CIMT group had lower AHA-18 performance than the NIT group (p = .028), but higher stable limit (p = .076). The age when 90% of development was reached was highest in the CIMT group (p = .014). Although non-significant, the Baby-CIMT group had higher mean curve than NIT and CIMT combined (AHA-18 p = .459, limit p = .477). CONCLUSION: The CIMT group improved more over time than the NIT group. Intensive training extended the window of development, and Baby-CIMT might promote early development.

A Goal-Directed Program for Wheelchair Use for Children and Young People with Cerebral Palsy in Uganda: An Explorative Intervention Study.

In this exploratory study, we investigate whether goal-directed intervention for wheelchairs can increase the activities of daily living for children and young people with cerebral palsy (CP) when implemented in rural Uganda. Thirty-two children and young people with CP (aged 3-18 years) participated in a home-visit intervention program, which included donating wheelchairs and setting individual goals. Goal achievement, frequency of wheelchair use, condition of wheelchairs, and caregivers' perspectives were collected by interviews at 6-10 month after the start of intervention and the after three years. Our result show that most wheelchairs were in good condition and frequently used after 6-10 month with 83% goal achievement (132/158 goals; mean 4.3 (range 0-7). The caregivers reported several advantages (e.g., the child being happier) and few disadvantages (e.g., poor design and durability). At the three-year follow-up, only eleven wheelchairs were still used by 23 available participants (seven deceased and two moved). The children achieved 60% of their goals (32/53 goals mean 2.9; range 1-5). This demonstrates that the goal-directed intervention program for wheelchairs can be successfully implemented in a low-income setting with a high rate of goal achievement and frequent wheelchair use, facilitating participation. However, maintenance services are crucial to obtain sustainable results.

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.

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.

Cross-cultural adaptation and reliability of the Arabic version of Children's Hand-use Experience Questionnaire (CHEQ).

Background: Validated outcome measures are essential for assessment and treatment of children with disabilities. The Children's Hand-use Experience Questionnaire (CHEQ) was developed and validated for use in Western countries for children with unilateral hand dysfunction. This study aimed to perform a cross-cultural adaptation and investigate reliability for the Arabic CHEQ. Methods: Translation and cross-cultural adaptation were performed in four phases: (i) forward-translation and reconciliation with feedback from parents and typically developing children from Jordan (n = 14); (ii) backward-translation and review; (iii) cognitive debriefing with parents and/or their children with unilateral hand dysfunction (n = 17); and (iv) review and proofreading. In the psychometric analyses, 161 children from Jordan (mean age [SD] 10y 8 m [5y 8 m]; 88 males) participated. Internal consistency was evaluated with Cronbach's alpha. Test-retest reliability was evaluated in 39 children with intraclass correlation coefficient (ICC) and weighted kappa (κ). Results: Synonyms of four words were added to accommodate for different Arabic dialects. On average, 93% of children with unilateral hand dysfunction and their parents understood the CHEQ items. One response alternative, 'Get help', to the opening question was unclear for 70% of the respondents and need further explanation. Two items about using a knife and fork were difficult to comprehend and culturally irrelevant. High internal consistency was demonstrated (Cronbach's alphas 0.94- 0.97) and moderate to excellent ICC (0.77-0.93). For 18 individual items, κ indicated poor to good agreement (κ between 0.28 and 0.66). Conclusions: After the suggested minor adjustments, the Arabic CHEQ will be comprehensible, culturally relevant and reliable for assessing children with unilateral hand dysfunction in Jordan.

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.

Usability and inter-rater reliability of the NeuroMotion app: A tool in General Movements Assessments.

BACKGROUND: Early intervention after perinatal brain insults requires early detection of infants with cerebral palsy (CP). General Movements Assessments (GMA) in the fidgety movement period has a high predictive value for CP. AIM: To investigate the NeuroMotion™ app's usability regarding film quality and user experience and to assess the inter-rater reliability of GMA in a neonatal risk group. METHODS: GMA, inter-rater reliability and film quality was assessed in a cohort consisting of 37 infants enrolled in a multicentre study of GMA as part of the Swedish neonatal follow-up program for high-risk infants. Some of these infants were filmed twice. For evaluation of user experience 95 parents of 52 infants were addressed with a web-based questionnaire. A GMA expert assessed film quality and performed GMA and three on-site assessors, individually performed GMA. Inter-rater reliability was computed using Krippendorff's alpha (k-alpha). RESULTS: In all, 45 films showed good or excellent quality. The response rate of the questionnaire survey was 40% and revealed predominantly positive perceptions of the NeuroMotion™ app. GMA in 36 infants resulted in substantial agreement (k-alpha = 0.72, 95%CI = 0.3-1.0) between the three on-site assessors' consensus and the GMA expert. Inter-rater reliability for GMA between the on-site assessors was moderate (k-alpha = 0.48, 0.18-0.74). CONCLUSION: The NeuroMotion™ app produces good technical quality films and the app user experience was overall positive. High agreement was observed between the on-site assessors and the GMA expert. The study design is feasible for more extensive GMA studies in cohorts of infants at risk of CP.

Early Intervention for Children Aged 0 to 2 Years With or at High Risk of Cerebral Palsy: International Clinical Practice Guideline Based on Systematic Reviews.

Importance: Cerebral palsy (CP) is the most common childhood physical disability. Early intervention for children younger than 2 years with or at risk of CP is critical. Now that an evidence-based guideline for early accurate diagnosis of CP exists, there is a need to summarize effective, CP-specific early intervention and conduct new trials that harness plasticity to improve function and increase participation. Our recommendations apply primarily to children at high risk of CP or with a diagnosis of CP, aged 0 to 2 years. Objective: To systematically review the best available evidence about CP-specific early interventions across 9 domains promoting motor function, cognitive skills, communication, eating and drinking, vision, sleep, managing muscle tone, musculoskeletal health, and parental support. Evidence Review: The literature was systematically searched for the best available evidence for intervention for children aged 0 to 2 years at high risk of or with CP. Databases included CINAHL, Cochrane, Embase, MEDLINE, PsycInfo, and Scopus. Systematic reviews and randomized clinical trials (RCTs) were appraised by A Measurement Tool to Assess Systematic Reviews (AMSTAR) or Cochrane Risk of Bias tools. Recommendations were formed using the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) framework and reported according to the Appraisal of Guidelines, Research, and Evaluation (AGREE) II instrument. Findings: Sixteen systematic reviews and 27 RCTs met inclusion criteria. Quality varied. Three best-practice principles were supported for the 9 domains: (1) immediate referral for intervention after a diagnosis of high risk of CP, (2) building parental capacity for attachment, and (3) parental goal-setting at the commencement of intervention. Twenty-eight recommendations (24 for and 4 against) specific to the 9 domains are supported with key evidence: motor function (4 recommendations), cognitive skills (2), communication (7), eating and drinking (2), vision (4), sleep (7), tone (1), musculoskeletal health (2), and parent support (5). Conclusions and Relevance: When a child meets the criteria of high risk of CP, intervention should start as soon as possible. Parents want an early diagnosis and treatment and support implementation as soon as possible. Early intervention builds on a critical developmental time for plasticity of developing systems. Referrals for intervention across the 9 domains should be specific as per recommendations in this guideline.

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.

Excessive premature mortality among children with cerebral palsy in rural Uganda: A longitudinal, population-based study.

BACKGROUND: Studies from high-income countries reported reduced life expectancy in children with cerebral palsy (CP), while no population-based study has evaluated mortality of children with CP in sub-Saharan Africa. This study aimed to estimate the mortality rate (MR) of children with CP in a rural region of Uganda and identify risk factors and causes of death (CODs). METHODS AND FINDINGS: This population-based, longitudinal cohort study was based on data from Iganga-Mayuge Health and Demographic Surveillance System in eastern Uganda. We identified 97 children (aged 2-17 years) with CP in 2015, whom we followed to 2019. They were compared with an age-matched cohort from the general population (n = 41 319). MRs, MR ratios (MRRs), hazard ratios (HRs), and immediate CODs were determined. MR was 3952 per 100 000 person years (95% CI 2212-6519) in children with CP and 137 per 100 000 person years (95% CI 117-159) in the general population. Standardized MRR was 25·3 in the CP cohort, compared with the general population. In children with CP, risk of death was higher in those with severe gross motor impairments than in those with milder impairments (HR 6·8; p = 0·007) and in those with severe malnutrition than in those less malnourished (HR = 3·7; p = 0·052). MR was higher in females in the CP cohort, with a higher MRR in females (53·0; 95% CI 26·4-106·3) than in males (16·3; 95% CI 7·2-37·2). Age had no significant effect on MR in the CP cohort, but MRR was higher at 10-18 years (39·6; 95% CI 14·2-110·0) than at 2-6 years (21·0; 95% CI 10·2-43·2). Anaemia, malaria, and other infections were the most common CODs in the CP cohort. CONCLUSIONS: Risk of premature death was excessively high in children with CP in rural sub-Saharan Africa, especially in those with severe motor impairments or malnutrition. While global childhood mortality has significantly decreased during recent decades, this observed excessive mortality is a hidden humanitarian crisis that needs to be addressed.

Do Infants at Risk of Developing Cerebral Palsy or Other Neurodevelopmental Disorders Learn What They Practice?

Through secondary analyses of the Small Step. Randomized Control Trial, we tested the hypothesis that children at risk of developing cerebral palsy (CP) or other neurodevelopmental disorders would learn what they practice, i.e., that they would have a more rapid development within the specifically trained foci (hand use or mobility) of each time period compared to the development rate within the foci not trained at that time. Nineteen infants (6.3 (1.62) months corrected age) included in the Small Step program were assessed at six time points during the intervention. For statistical analysis, general and mixed linear models were used, and the independent variables were the Peabody Developmental Motor scale (stationary, locomotion, grasping and visuomotor sub scales), the Gross Motor Function Measure-66 and the Hand Assessment for Infants. Outcomes related to gross motor function improved significantly more after mobility training than after hand use training, while fine motor function was improved to the same extent following both training types. Significantly higher improvements after the first training period were seen in one out of three outcome measures in both gross and fine motor assessments. The improvements observed were all independent of diagnosis at two years. The concept "you learn what you practice" was most clearly confirmed in the case of gross motor development.

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.

Efficacy of the Small Step Program in a Randomized Controlled Trial for Infants under 12 Months Old at Risk of Cerebral Palsy (CP) and Other Neurological Disorders.

The objective was to evaluate the effects of the Small Step Program on general development in children at risk of cerebral palsy (CP) or other neurodevelopmental disorders. A randomized controlled trial compared Small Step with Standard Care in infants recruited at 4-9 months of corrected age (CA). The 35-week intervention targeted mobility, hand use, and communication during distinct periods. The Peabody Developmental Motor Scales2ed (PDMS-2) was the primary outcome measure. For statistical analysis, a general linear model used PDMS-2 as the main outcome variable, together with a set of independent variables. Thirty-nine infants were randomized to Small Step (n = 19, age 6.3 months CA (1.62 SD)) or Standard Care (n = 20, age 6.7 months CA (1.96 SD)). Administering PDMS-2 at end of treatment identified no group effect, but an interaction between group and PDMS-2 at baseline was found (p < 0.02). Development was associated with baseline assessments in the Standard Care group, while infants in the Small Step group developed independent of the baseline level, implying that Small Step helped the most affected children to catch up by the end of treatment. This result was sustained at 2 years of age for PDMS-2 and the PEDI mobility scale.

Early prediction of unilateral cerebral palsy in infants with asymmetric perinatal brain injury - Model development and internal validation.

BACKGROUND: Early diagnosis of unilateral cerebral palsy is important after asymmetric perinatal brain injury (APBI). Our objective is to estimate the risk of unilateral cerebral palsy (UCP) in infants with APBI during the first months of life using neuroimaging and clinical assessment. PATIENTS AND METHODS: Prognostic multivariable prediction modeling study including 52 infants (27 males), median gestational age 39.3 weeks with APBI from Sweden (n = 33) and the Netherlands (n = 19). INCLUSION CRITERIA: (1) neonatal MRI within one month after term equivalent age (TEA), (2) Hand Assessment for Infants (HAI) between 3.5 and 4.5 months of (corrected) age. UCP was diagnosed ≥24 months of age. Firth regression with cross-validation was used to construct and internally validate the model to estimate the risk for UCP based on the predictors corticospinal tract (CST) and basal ganglia/thalamus (BGT) involvement, contralesional HAI Each hand sum score (EaHS), gestational age and sex. RESULTS: UCP was diagnosed in 18 infants (35%). Infants who developed UCP more often had involvement of the CST and BGT on neonatal MRI and had lower contralesional HAI EaHS compared to those who did not develop UCP. The final model showed excellent accuracy for UCP prediction between 3.5 and 4.5 months (area under the curve, AUC = 0.980; 95% CI 0.95-1.00). CONCLUSIONS: Combining neonatal MRI, the HAI, gestational age and sex accurately identify the prognostic risk of UCP at 3.5-4.5 months in infants with APBI.

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.