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.

Correspondence between Expected, Perceived, and Measured Effects of BoNT-A Treatment in Calf Muscles among Children and Adolescents with Cerebral Palsy: A Mixed Methods Study.

(1) Background: Our study explores the relationship between expected, perceived, and measured effects of botulinum toxin A (BoNT-A) treatment and saline (placebo) in children and adolescents with cerebral palsy (CP) in the calf muscles of 20 children and adolescents with cerebral palsy (CP), aged 4-15 years, using the Gross Motor Function Classification System (GMFCS) I-II. (2) Methods: A mixed methods parallel database design was used. Quantitative and qualitative data were collected at baseline and four weeks after treatment. The primary quantitative measure was gross energy cost (EC) during walking, obtained from a 5-Minute Walk Test (5MWT), while qualitative semi-structured interviews were performed with each parent and child/adolescent individually. (3) Results: Four weeks after treatment, we did not find any correspondence between expected, measured, and perceived effects. Interestingly, parental perceptions of treatment effects were more consistent than the measured outcomes. We also observed a connection between parental treatment expectations and perceived effects, often related to reduced energy expenditure. Children tended to view their parents as treatment experts and had fewer expectations and perceptions themselves. (4) Conclusions: These findings support the importance of child-centered care, which entails actively listening to children's expectations and perceptions during the treatment process.

Characteristics of general movements in preterm infants assessed by computer-based video analysis.

BACKGROUND: Previous evidence suggests that the variability of the spatial center of infant movements, calculated by computer-based video analysis software, can identify fidgety general movements (GMs) and predict cerebral palsy. AIM: To evaluate whether computer-based video analysis quantifies specific characteristics of normal fidgety movements as opposed to writhing general movements. METHODS: A longitudinal study design was applied. Twenty-seven low-to moderate-risk preterm infants (20 boys, 7 girls; mean gestational age 32 [SD 2.7, range 27-36] weeks, mean birth weight 1790 grams [SD 430g, range 1185-2700g]) were videotaped at the ages of 3-5 weeks (period of writhing GMs) and 10-15 weeks (period of fidgety GMs) post term. GMs were classified according to Prechtl's general movement assessment method (GMA) and by computer-based video analysis. The variability of the centroid of motion (CSD), derived from differences between subsequent video frames, was calculated by means of computer-based video analysis software; group mean differences between GM periods were reported. RESULTS: The mean variability of the centroid of motion (CSD) determined by computer-based video analysis was 7.5% lower during the period of fidgety GMs than during the period of writhing GMs (p = 0.004). CONCLUSION: Our findings support that the variability of the centroid of motion reflects small and variable movements evenly distributed across the body, and hence shows that computer-based video analysis qualifies for assessment of direction and amplitude of FMs in young infants.

Bimanual Capacity of Children With Cerebral Palsy: Intra- and Interrater Reliability of a Revised Edition of the Bimanual Fine Motor Function Classification.

AIMS: To develop a revised edition of the Bimanual Fine Motor Function (BFMF 2), as a classification of fine motor capacity in children with cerebral palsy (CP), and establish intra- and interrater reliability of this edition. METHODS: The content of the original BFMF was discussed by an expert panel, resulting in a revised edition comprising the original description of the classification levels, but in addition including figures with specific explanatory text. Four professionals classified fine motor function of 79 children (3-17 years; 45 boys) who represented all subtypes of CP and Manual Ability Classification levels (I-V). Intra- and inter-rater reliability was assessed using overall intra-class correlation coefficient (ICC), and Cohen's quadratic weighted kappa. RESULTS: The overall ICC was 0.86. Cohen's weighted kappa indicated high intra-rater (кw: >0.90) and inter-rater (кw: >0.85) reliability. CONCLUSIONS: The revised BFMF 2 had high intra- and interrater reliability. The classification levels could be determined from short video recordings (<5 minutes), using the figures and precise descriptions of the fine motor function levels included in the BFMF 2. Thus, the BFMF 2 may be a feasible and useful classification of fine motor capacity both in research and in clinical practice.

A change in temporal organization of fidgety movements during the fidgety movement period is common among high risk infants.

AIM: General movement assessment (GMA) at 9-20 weeks post-term, can effectively predict cerebral palsy. Our aim was to evaluate intra-individual variability of the temporal organization of fidgety movements (FMs) in high risk infants. MATERIAL AND METHODS: 104 High risk infants (66 males) with at least two video recordings from the FMs period participated. 45 of the infants had GA <28 weeks and/or BW ≤800 g. Mean post-term age at first and second assessments was 11.0 (8-16) and 14.0 (11-17) weeks, respectively, and median time-difference between the assessments was 2.0 (range: three days to six weeks) weeks. Video recordings were analyzed according to Prechtl's GMA. RESULTS: 33 (32%) Infants were classified differently at first and second assessments. Six infants (6%) changed from normal to abnormal, and 10 (10%) changed from abnormal to normal FMs. Seven of the ten who changed classification from abnormal to normal were born before GA 26 weeks. A change between intermittent and continual, which are both considered normal, was observed in 17 (16%) infants. CONCLUSION: A change in temporal organization of FMs is common in high risk infants. Especially in extremely preterm infants with abnormal FMs, more than one assessment should be performed before long-term prognosis is considered.

Outcome measures evaluating hand function in children with bilateral cerebral palsy: a systematic review.

AIM: To review outcome measures used to evaluate hand function, with emphasis on manual capacity and performance, in children with bilateral cerebral palsy (CP), to describe the content and measurement properties of such measures, and to investigate the quality of the studies that have examined these properties. METHOD: Embase, MEDLINE, PubMed, and CINAHL were searched. The COSMIN-criteria (COnsensus-based Standards for the selection of health Measurement INstruments) were used to assess the quality of studies and the Terwee criteria were used to assess the result of the studies. RESULTS: Five hand function measures were identified from 16 papers. The strongest level of evidence for aspects of validity and reliability was found for the Melbourne Assessment 2, assessing unimanual capacity, and for the questionnaire ABILHAND-Kids, assessing perceived manual ability in daily activities. However, evidence for the responsiveness of these measures is missing. INTERPRETATION: Further high-quality studies providing evidence for responsiveness, as well as for additional aspects of validity and reliability of the Melbourne Assessment 2 and the ABILHAND-Kids, are needed. Furthermore, there is a need to develop appropriate outcome measures evaluating how children with bilateral CP use their hands when handling objects in bimanual tasks.

Validity and Responsiveness of the Trunk Impairment Scale and Trunk Control Measurement Scale in Young Individuals with Cerebral Palsy.

AIM: This study examines construct validity and responsiveness of the Trunk Impairment Scale (TIS) and Trunk Control Measurement Scale (TCMS) in individuals with cerebral palsy (CP). METHODS: Twenty-six individuals with CP (nine males), 8-29 years (mean age 17.6) with gross motor function corresponding to GMFCS I-IV, participated in three weeks of intensive and varied physical training at a health sports center. Trunk control was assessed with the TIS (includes three subscales) and TCMS (includes three subscales), and gross motor function with the Gross Motor Function Measure 66 item set (GMFM-66-IS), before and after the training period. The GMFM-66-IS was used as a comparison measure. RESULTS: The median score of the TCMS subscale dynamic sitting balance, reaching (DSB-R), increased from 6 to 7 (range: 1-10; p = .031), and there was a median change of 3 points in GMFM-66-IS score (p = .036). There were no significant changes in the TIS. The correlations (Spearman's rho), between the TIS, TCMS, and the GMFM-66-IS (pre-scores), ranged between 0.57 and 0.75 (p< .003). Correlations between change scores (pre- and post-scores) were low, and not statistically significant. However, the TCMS DSB-R change score correlated significantly with hours spent on "trunk-targeted training" like paddling/rowing (rho = 0.66; p = .003) and horseback riding (rho = 0.54; p = .011). CONCLUSIONS: Our results support construct validity of the TIS and TCMS in young individuals with CP, whereas responsiveness could not be documented. However, the correlations between the TCMS DSB-R change score and hours spent on ''trunk-targeted training'' suggest that this subscale may have the potential to be used in intervention studies.

Test-retest reliability of computer-based video analysis of general movements in healthy term-born infants.

BACKGROUND: A computer-based video analysis has recently been presented for quantitative assessment of general movements (GMs). This method's test-retest reliability, however, has not yet been evaluated. AIMS: The aim of the current study was to evaluate the test-retest reliability of computer-based video analysis of GMs, and to explore the association between computer-based video analysis and the temporal organization of fidgety movements (FMs). STUDY DESIGN: Test-retest reliability study. SUBJECTS: 75 healthy, term-born infants were recorded twice the same day during the FMs period using a standardized video set-up. OUTCOME MEASURES: The computer-based movement variables "quantity of motion mean" (Qmean), "quantity of motion standard deviation" (QSD) and "centroid of motion standard deviation" (CSD) were analyzed, reflecting the amount of motion and the variability of the spatial center of motion of the infant, respectively. In addition, the association between the variable CSD and the temporal organization of FMs was explored. Intraclass correlation coefficients (ICC 1.1 and ICC 3.1) were calculated to assess test-retest reliability. RESULTS: The ICC values for the variables CSD, Qmean and QSD were 0.80, 0.80 and 0.86 for ICC (1.1), respectively; and 0.80, 0.86 and 0.90 for ICC (3.1), respectively. There were significantly lower CSD values in the recordings with continual FMs compared to the recordings with intermittent FMs (p<0.05). CONCLUSION: This study showed high test-retest reliability of computer-based video analysis of GMs, and a significant association between our computer-based video analysis and the temporal organization of FMs.

The relationship between trunk control in sitting and during gait in children and adolescents with cerebral palsy.

AIM: To assess the relationship between trunk control in sitting and trunk control during gait in children and adolescents with cerebral palsy (CP). METHOD: Twenty-six children (17 males, nine females) with spastic CP (Gross Motor Function Classification System I-III [15 unilateral, 11 bilateral], mean age 13.5y), were included. Trunk control in sitting was assessed with the Trunk Impairment Scale (TIS) and the Trunk Control Measurement Scale (TCMS), and trunk control during gait by a trunk-worn accelerometer. The Pearson's rank correlation coefficient, partial correlation (rp ), and linear regression analysis were applied to assess the relationship between trunk control in sitting and during gait. RESULTS: Trunk control in sitting assessed with the TCMS and the TIS total scores both correlated with trunk accelerations during gait (rp =0.67 and 0.60 respectively). Moreover, some subscale scores correlated equally well with trunk control during gait (the TCMS dynamic sitting balance-reaching subscale score [DSB-R]; rp =0.61) or even higher (TIS dynamic sitting balance subscale [DSB]; rp =0.66). INTERPRETATION: Trunk control in sitting has a moderate to good correlation with trunk control during gait. Our results suggest that the subscale DSB-R of the TCMS, being less time consuming, may be applied in clinical assessment to gain information on trunk control during gait. Future studies are needed to explore how this information may be applied in the planning of 'gait interventions'.

Gait characteristics in children and adolescents with cerebral palsy assessed with a trunk-worn accelerometer.

This study aimed to investigate gait characteristics reflecting balance and progression in children and adolescents with cerebral palsy (CP) compared with typically developing (TD) children. Gait characteristics variables representing aspects of balance were trunk acceleration, interstride regularity and asymmetry of accelerations while gait characteristics representing progression were gait speed, cadence, step time and step length. Children in the age range 5-18 years (mean age 11.1 years) with spastic CP (n=41) and a gross motor function corresponding to GMFCS I-III and children with TD (n=29) were included. The children walked back and forth along a 5m pathway with a tri-axial accelerometer worn on the lower back to allow assessment of their gait characteristics. Data were recorded along the anterioposterior (AP), mediolateral (ML), and vertical (V) axes. To assess the magnitude of potential differences in gait characteristics, standard deviation scores were calculated, using TD children as reference. Gait parameters related to balance, such as AP, ML, and V accelerations, were higher in the children with CP (z-scores between 0.4 and 0.7) and increased with increasing GMFCS levels. The differences in accelerations in the AP and V directions increased between children with CP and TD children with increasing speed. Also asymmetry in trunk accelerations differed significantly between the two groups in all three directions (z-scores between 0.8 and 1.8 higher in the CP group), while interstride regularity differed only slightly between children with CP and TD children, and only in the AP direction. Gait characteristics also differed between children with the spastic subtypes unilateral and bilateral CP, for accelerations and asymmetry in the AP and ML directions. Our results showed significant differences in gait characteristics between children with CP and TD children. The differences may be more related to balance than progression, and these problems seem to rise with increasing gross motor impairment and speed.

Clinical tools to assess balance in children and adults with cerebral palsy: a systematic review.

We aimed to review tools used to assess balance in clinical practice in children and adults with cerebral palsy (CP), to describe their content and measurement properties and to evaluate the quality of the studies that have examined these properties. CINAHL, Embase, and PubMed/MEDLINE were searched. The COnsensus-based Standards for selection of health Measurement INstruments (COSMIN) was used to assess the 'quality of studies' and the Terwee criteria were used to assess the 'result of studies'. Twenty-two clinical balance tools were identified from 35 papers. The content and focus of the tools varied significantly. There was moderate or limited levels of evidence for most of the measurement properties of the tools; the strongest level of evidence was found for the Trunk Control Measurement Scale and the Level of Sitting Scale, in the category 'maintain balance', the Timed Up and Go and the Segmental Assessment of Trunk Control in the categories 'achieve balance' and 'restore balance' respectively. Information on responsiveness was scarce. Further studies providing better evidence for reliability and responsiveness for clinical balance tools are needed. In the meantime, results of studies evaluating effects of treatment of balance in individuals with CP should be interpreted with caution.

Reliability and validity of the Trunk Impairment Scale in children and adolescents with cerebral palsy.

Standardized clinical tools are useful for treatment planning and evaluation, however clinical tools to assess quality in trunk movements in children with cerebral palsy (CP) are sparse. We have recently reported good intra- and inter-observer reliability of the Trunk Impairment Scale (TIS) in 5-12 year old children with CP. The aim of this study was to assess reliability in adolescents (13-19 years old), and to assess the construct validity in children and adolescents in the whole age spectrum from 5 to 19 years. Video recordings of 17 children with CP with Gross Motor Function Classification (GMFCS) level I-IV were analyzed by three observers on two occasions. For construct validity the TIS was compared with Gross Motor Function Measure (GMFM), in 37 children with GMFCS levels I-IV. Intraclass correlation coefficients varied between 0.82 and 0.98, and 86% of the kappa values varied between 0.61 and 1.00, suggesting high inter- and intra-observer reliability. The smallest detectable difference (SDD) of the TIS (scale range 0-23) varied between 2.55 and 3.82 for intra- and 4.07-8.23 for inter-observer observations. The high inter-observer SDD was partly due to consistently lower TIS scores by one observer. The correlation between the TIS total score and the dimension scores of the GMFM was high (Spearman's rho: 0.80-0.87), while decreasing GMFCS levels were associated with increasing total TIS score; both findings indicating good construct validity of the TIS. This study suggests that the TIS is a reliable and valid measure of trunk control for both children and adolescents with cerebral palsy.

Effectiveness of resistance training in combination with botulinum toxin-A on hand and arm use in children with cerebral palsy: a pre-post intervention study.

BACKGROUND: The aim of this pilot study was to examine the effects of additional resistance training after use of Botulinum Toxin-A (BoNT-A) on the upper limbs in children with cerebral palsy (CP). METHODS: Ten children with CP (9-17 years) with unilaterally affected upper limbs according to Manual Ability Classification System II were assigned to two intervention groups. One group received BoNT-A treatment (group B), the other BoNT-A plus eight weeks resistance training (group BT). Hand and arm use were evaluated by means of the Melbourne assessment of unilateral upper limb function (Melbourne) and Assisting Hand Assessment (AHA). Measures of muscle strength, muscle tone, and active range of motion were used to assess neuromuscular body function. Measurements were performed before and two and five months after intervention start. Change scores and differences between the groups in such scores were subjected to Mann-Whitney U and Wilcoxon Signed Rank tests, respectively. RESULTS: Both groups had very small improvements in AHA and Melbourne two months after BoNT-A injections, without differences between groups. There were significant, or close to significant, short-term treatment effects in favour of group BT for muscle strength in injected muscles (elbow flexion strength, p = .08) and non-injected muscles (elbow extension and supination strength, both p = .05), without concomitant increases in muscle tone. Active supination range improved in both groups, but more so in group BT (p = .09). There were no differences between the groups five months after intervention start. CONCLUSIONS: Resistance training strengthens non-injected muscles temporarily and may reduce short-term strength loss that results from BoNT-A injections without increasing muscle tone. Moreover, additional resistance training may increase active range of motion to a greater extent than BoNT-A alone. None of the improvements in neuromuscular impairments further augmented use of the hand and arm. Larger clinical trials are needed to establish whether resistance training can counteract strength loss caused by BoNT-A, whether the combination of BoNT-A and resistance training is superior to BoNT-A or resistance training alone in improving active range of motion, and whether increased task-related training is a more effective approach to improve hand and arm use in children with CP.

Intra- and inter-observer reliability of the Trunk Impairment Scale for children with cerebral palsy.

Standardized scales to evaluate qualities of trunk movements in children with dysfunction are sparse. An examination of the reliability of scales that may be useful in the clinic is important. The aim of this study was to examine the reliability of the Trunk Impairment Scale (TIS) for children with cerebral palsy (CP). Standardized scales are useful for treatment planning and evaluation. This was an intra- and inter-observer reliability study. Video recordings of 25 children, 20 with CP and 5 with no motor impairment, in the age group 5-12 years of age, were analyzed by three observers on two occasions. Intraclass correlation coefficients (ICC [1,1] and [3,1]) with 95% confidence intervals, standard error of measurement, kappa values and percent agreement, and Bland-Altman Plots were calculated. The relative reliability (intra- and inter-observer reliability) was very high for the total score and subscale score of the TIS: ICC [1,1] and [3,1] varied between .94 and 1.00. Kappa values for the items ranged from .45 to 1.00. The absolute reliability values for the parameters are reported. The Bland-Altman analysis showed consistency of scores. This study indicates that TIS is a reliable measure of trunk control for children, 5-12 years of age, with CP.