| 1. |
- Alriksson-Schmidt, Ann I, et al.
(author)
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A combined surveillance program and quality register improves management of childhood disability
- 2017
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In: Disability and Rehabilitation. - : TAYLOR & FRANCIS LTD. - 0963-8288 .- 1464-5165. ; 39:8, s. 830-836
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Journal article (peer-reviewed)abstract
- Purpose: To describe a concept for prevention of secondary conditions in individuals with chronic neuromuscular disabilities by using two Swedish developed follow-up-programmes for cerebral palsy (CP; CPUP) and myelomeningocele (MMC; MMCUP) respectively as examples. Method: This paper describes and outlines the rationale, development and implementation of CPUP and MMCUP. Results: Both programmes are multidisciplinary longitudinal follow-up programmes that simultaneously serve as national registries. The programmes are population-based and set in Swedish habilitation clinics. Most children (95%) born 2000 or later with CP are enrolled in CPUP and the recruitment of adults is underway. CPUP has also been implemented in Norway, Denmark, Iceland, Scotland and parts of Australia. In MMCUP, almost all children with MMC born 2007 or later participate and individuals of all ages are now invited. The registries provide epidemiological profiles associated with CP and MMC and platforms for population-based research and quality of care improvement. Conclusions: Through multidisciplinary follow-up and early detection of emerging complications individuals with CP or MMC can receive less complex and more effective interventions than if treatment is implemented at a later stage. Possibilities and challenges to design, implement and continuously run multidisciplinary secondary prevention follow-up programmes and quality registries for individuals with CP or MMC are described and discussed.Implications for rehabilitationIndividuals with disabilities such as cerebral palsy or myelomeningocele are at risk of developing secondary conditions.Multidisciplinary population-based longitudinal follow-up programmes seem effective in preventing certain types of secondary conditions. IMPLICATIONS FOR REHABILITATION Individuals with disabilities such as cerebral palsy or myelomeningocele are at risk of developing secondary conditions. Multidisciplinary population-based longitudinal follow-up programmes seem effective in preventing certain types of secondary conditions.
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| 2. |
- Ek, Linda, et al.
(author)
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Hand Assessment for Infants : normative reference values
- 2019
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In: Developmental Medicine & Child Neurology. - : Mac Keith Press. - 0012-1622 .- 1469-8749. ; 61:9, s. 1087-1092
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Journal article (peer-reviewed)abstract
- 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.
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| 3. |
- Eliasson, Ann-Christin, 1950-, et al.
(author)
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Efficacy of baby-CIMT : study protocol for a randomised controlled trial on infants below age 12 months, with clinical signs of unilateral CP
- 2014
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In: BMC Pediatrics. - : BioMed Central. - 1471-2431. ; 14
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Journal article (peer-reviewed)abstract
- BACKGROUND: Infants with unilateral brain lesions are at high risk of developing unilateral cerebral palsy (CP). Given the great plasticity of the young brain, possible interventions for infants at risk of unilateral CP deserve exploration. Constraint-induced movement therapy (CIMT) is known to be effective for older children with unilateral CP but is not systematically used for infants. The development of CIMT for infants (baby-CIMT) is described here, as is the methodology of an RCT comparing the effects on manual ability development of baby-CIMT versus baby-massage. The main hypothesis is that infants receiving baby-CIMT will develop manual ability in the involved hand faster than will infants receiving baby-massage in the first year of life.METHOD AND DESIGN: The study will be a randomised, controlled, prospective parallel-group trial. Invited infants will be to be randomised to either the baby-CIMT or the baby-massage group if they: 1) are at risk of developing unilateral CP due to a known neonatal event affecting the brain or 2) have been referred to Astrid Lindgren Children's Hospital due to asymmetric hand function. The inclusion criteria are age 3-8 months and established asymmetric hand use. Infants in both groups will receive two 6-weeks training periods separated by a 6-week pause, for 12 weeks in total of treatment. The primary outcome measure will be the new Hand Assessment for Infants (HAI) for evaluating manual ability. In addition, the Parenting Sense of Competence scale and Alberta Infant Motor Scale will be used. Clinical neuroimaging will be utilized to characterise the brain lesion type. To compare outcomes between treatment groups generalised linear models will be used.DISCUSSION: The model of early intensive intervention for hand function, baby-CIMT evaluated by the Hand Assessment for Infants (HAI) will have the potential to significantly increase our understanding of how early intervention of upper limb function in infants at risk of developing unilateral CP can be performed and measured.TRIAL REGISTRATION: SFO-V4072/2012, 05/22/2013.
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| 4. |
- Eliasson, Ann-Christin, 1950-, et al.
(author)
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The effectiveness of Baby-CIMT in infants younger than 12 months with clinical signs of unilateral-cerebral palsy : an explorative study with randomized design
- 2018
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In: Research in Developmental Disabilities. - : Elsevier. - 0891-4222 .- 1873-3379. ; 72, s. 191-201
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Journal article (peer-reviewed)abstract
- AIM: To explore the effectiveness of baby-CIMT (constraint-induced movement therapy) and baby-massage for improving the manual ability of infants younger than 12 months with unilateral cerebral palsy (CP).METHOD: Infants eligible for inclusion were 3-8 months old with asymmetric hand function and at high risk of developing unilateral CP. Thirty-seven infants were assigned randomly to receive baby-CIMT or baby-massage. At one year of age 31 children were diagnosed with unilateral CP, 18 (8 boys, 6.1±1.7months) of these had received baby-CIMT and 13 (8 boys, 5.0±1.6months) baby-massage. There were two 6-week training periods separated by a 6-week pause. The Hand Assessment for Infants (HAI), Assisting Hand Assessment (AHA), the Parenting Sense of Competence Scale (PSCS) and a questionnaire concerning feasibility were applied.RESULTS: There was improvement in the "Affected hand score" of HAI from median 10 (6;13 IQR) to 13 (7;17 IQR) raw score in the baby-CIMT group and from 5 (4;11 IQR) to 6 (3;12 IQR) for baby-massage with a significant between group difference (p=0.041). At 18-month of age, the median AHA score were 51 (38;72 IQR) after baby-CIMT (n=18) compared to 24 (19;43 IQR) baby-massage (n=9). The PSCS revealed an enhanced sense of competence of being a parent among fathers in the baby-CIMT group compared to fathers in the baby-massage (p=0.002). Parents considered both interventions to be feasible.CONCLUSION: Baby-CIMT appears to improve the unimanual ability of young children with unilateral CP more than massage.
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| 5. |
- Krumlinde-Sundholm, Lena, et al.
(author)
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Development of the Hand Assessment for Infants : evidence of internal scale validity
- 2017
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In: Developmental Medicine & Child Neurology. - : Mac Keith Press. - 0012-1622 .- 1469-8749. ; 59:12, s. 1276-1283
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Journal article (peer-reviewed)abstract
- 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.
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| 6. |
- Ullenhag, Anna, et al.
(author)
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An international comparison of patterns of participation in leisure activities for children with and without disabilities in Sweden, Norway and the Netherlands
- 2012
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In: Developmental Neurorehabilitation. - : Informa UK Limited. - 1751-8423 .- 1751-8431. ; 15:5, s. 369-385
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Journal article (peer-reviewed)abstract
- Purpose: To investigate whether there are differences in participation in leisure activities between children with and without disabilities in Sweden, Norway and the Netherlands and how much personal and environmental factors explain leisure performance.Methods: In a cross-sectional analytic design, the Children's Assessment of Participation and Enjoyment, CAPE, was performed with 278 children with disabilities and 599 children without disabilities aged 6–17 years. A one-way between-groups ANOVA explored the differences in participation between the countries. Hierarchical multiple regression analysis assessed if age, gender, educational level, living area and country of residence explained the variance in participation.Results: Scandinavian children with disabilities participated in more activities with higher frequency compared to Dutch children. The strongest predictor was country of residence. For children without disabilities, differences existed in informal activities, the strongest predictor was gender.Conclusion: Differences in school- and support systems between the countries seem to influence patterns of participation, affecting children with disabilities most.
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| 7. |
- Ullenhag, Anna, et al.
(author)
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Cultural validity of the children's assessment of participation and enjoyment/preferences for activities of children : CAPE/PAC
- 2012
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In: Scandinavian Journal of Occupational Therapy. - : Informa UK Limited. - 1103-8128 .- 1651-2014. ; 19:5, s. 428-438
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Journal article (peer-reviewed)abstract
- Objective: The aim was to evaluate whether the activity items of the Children's Assessment of Participation and Enjoyment/Preferences for Activities of Children (CAPE/PAC) were relevant for Swedish children. Subjects: A total of 337 typically developed children aged 6–17 years old. Methods: The CAPE/PAC was translated into Swedish in accordance with accepted translation procedures. By means of 14 group interviews with children with and without disabilities aged 6–15 years old and parents, available leisure activities were listed. These were matched to the items in the CAPE/PAC. Sixteen new potential activities were added and tested on 337 typical developed children from different regions of Sweden. A cutoff level of activities performed by >10% was set to identify relevant activities. Differences between the original and a proposed Swedish version were analysed using paired-samples t-tests of standardized mean scores. Results: Three new activity items were included, for 10 items new activity examples were added, and three not relevant items were excluded. In the Swedish version the outcome of standardized mean diversity score was significantly higher compared with the outcome of the original version. Conclusions:When using instruments in new contexts, it is not enough simply to translate; validation of the item relevance to the new context is essential.
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| 8. |
- Eliasson, Ann-Christin, 1950-, et al.
(author)
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Guidelines for future research in constraint-induced movement therapy for children with unilateral cerebral palsy : an expert consensus
- 2014
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In: Developmental Medicine & Child Neurology. - : Mac Keith Press. - 0012-1622 .- 1469-8749. ; 56:2, s. 125-137
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Journal article (peer-reviewed)abstract
- AIM: The aim of this study was to provide an overview of what is known about constraintinduced movement therapy (CIMT) in children with unilateral cerebral palsy (CP), to identify current knowledge gaps, and to provide suggestions for future research.METHOD: Nine experts participated in a consensus meeting. A comprehensive literature search was conducted and data were summarized before the meeting. The core model produced by the European network for Health Technology Assessment was used as a framework for discussion and to identify critical issues for future research.RESULTS: All models of CIMT have demonstrated improvements in the upper limb abilities of children with unilateral CP. A consensus was reached on 11 important questions to be further explored in future studies. The areas of highest priority included the effect of dosage, the effect of repeated CIMT, and the impact of predictive factors, such as age, on the response to CIMT. Consensus suggestions for future study designs and the use of validated outcome measures were also provided.INTERPRETATION: The CIMT construct is complex, and much remains unknown. It is unclear whether a specific model of CIMT demonstrates superiority over others and whether dosage of training matters. Future research should build upon existing knowledge and aim to provide information that will help implement CIMT in various countries with different healthcare resources and organizational structures.
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| 9. |
- Eliasson, Ann-Christin, 1950-, et al.
(author)
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Mini-MACS : development of the Manual Ability Classification System for children younger than 4 years of age with signs of cerebral palsy
- 2017
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In: Developmental Medicine & Child Neurology. - : Mac Keith Press. - 0012-1622 .- 1469-8749. ; 59:1, s. 72-78
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Journal article (peer-reviewed)abstract
- 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.
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| 10. |
- Eliasson, Ann-Christin, et al.
(author)
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The Manual Ability Classification System (MACS) for children with cerebral palsy: scale development and evidence of validity and reliability
- 2006
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In: Developmental Medicine & Child Neurology. - : Wiley. - 0012-1622 .- 1469-8749. ; 48:7, s. 549-554
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Journal article (peer-reviewed)abstract
- The Manual Ability Classification System (MACS) has been developed to classify how children with cerebral palsy (CP) use their hands when handling objects in daily activities. The classification is designed to reflect the child's typical manual performance, not the child's maximal capacity. It classifies the collaborative use of both hands together. Validation was based on the experience within an expert group, a review of the literature, and thorough analysis of children across a spectrum of function. Discussions continued until consensus was reached, first about the constructs, then about the content of the five levels. Parents and therapists were interviewed about the content and the description of levels. Reliability was tested between pairs of therapists for 168 children (70 females, 98 males; with hemiplegia [n=52], diplegia [n=70], tetraplegia [n=19], ataxia [n=6], dyskinesia [n=19], and unspecified CP [n=2]) between 4 and 18 years and between 25 parents and their children's therapists. The results demonstrated that MACS has good validity and reliability. The intraclass correlation coefficient between therapists was 0.97 (95% confidence interval 0.96-0.98), and between parents and therapist was 0.96 (0.89-0.98), indicating excellent agreement.
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