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1.
  • Eliasson, Ann-Christin, et al. (author)
  • Efficacy of the small step program in a randomised controlled trial for infants below age 12 months with clinical signs of CP; a study protocol
  • 2016
  • In: BMC Pediatrics. - London : Springer Science and Business Media LLC. - 1471-2431. ; 16
  • Journal article (peer-reviewed)abstract
    • Background: Children with cerebral palsy (CP) have life-long motor disorders, and they are typically subjected to extensive treatment throughout their childhood. Despite this, there is a lack of evidence supporting the effectiveness of early interventions aiming at improving motor function, activity, and participation in daily life. The study will evaluate the effectiveness of the newly developed Small Step Program, which is introduced to children at risk of developing CP during their first year of life. The intervention is based upon theories of early learning-induced brain plasticity and comprises important components of evidence-based intervention approaches used with older children with CP.Method and design: A two-group randomised control trial will be conducted. Invited infants at risk of developing CP due to a neonatal event affecting the brain will be randomised to either the Small Step Program or to usual care. They will be recruited from Astrid Lindgren Children's Hospital at regular check-up and included at age 3-8 months. The Small Step Program was designed to provide individualized, goal directed, and intensive intervention focusing on hand use, mobility, and communication in the child's own home environment and carried out by their parents who have been trained and coached by therapists. The primary endpoint will be approximately 35 weeks after the start of the intervention, and the secondary endpoint will be at 2 years of age. The primary outcome measure will be the Peabody Developmental Motor Scale (second edition). Secondary assessments will measure and describe the children's general and specific development and brain pathology. In addition, the parents' perspective of the program will be evaluated. General linear models will be used to compare outcomes between groups.Discussion: This paper presents the background and rationale for developing the Small-Step Program and the design and protocol of a randomized controlled trial. The aim of the Small Step Program is to influence development by enabling children to function on a higher level than if not treated by the program and to evaluate whether the program will affect parent's ability to cope with stress and anxiety related to having a child at risk of developing CP.
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2.
  • Eliasson, Ann-Christin, et al. (author)
  • The Manual Ability Classification System (MACS) for children with cerebral palsy: scale development and evidence of validity and reliability
  • 2006
  • In: Developmental Medicine & Child Neurology. - : Wiley. - 0012-1622 .- 1469-8749. ; 48:7, s. 549-554
  • 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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3.
  • Holmström, Linda, et al. (author)
  • 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
  • 2019
  • In: Journal of Clinical Medicine. - : MDPI. - 2077-0383. ; 8:7
  • Journal article (peer-reviewed)abstract
    • 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.
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4.
  • Lindner, Helen, 1967- (author)
  • The Assessment of Capacity for Myoelectric Control : Psychometric evidence and comparison with upper limb prosthetic outcome measures
  • 2013
  • Doctoral thesis (other academic/artistic)abstract
    • Evaluation of outcomes using validated prosthetic outcome measures (OMs) is a current priority in upper limb (UL) prosthetics, and OMs with psychometric evidence toward UL prosthesis users are thus necessary. The “Assessment of Capacity for Myoelectric Control” (ACMC) is a tool that assesses the ability to control a myoelectric prosthetic hand. Some psychometric aspects of the ACMC have been previously investigated, but others are still lacking. A major part of this thesis was thus to search and assess the psychometric evidence of the ACMC. Data were collected from prosthesis users of different ages, prosthetic sides, and sexes. Rasch analysis was used to search for validity evidence and activity influence on the users’ ACMC ability measures, while reliability statistics was used to search for reliability evidence. Overall, the validity evidence was satisfactory in terms of unidimensionality, item technical quality, item difficulty, and relation to prosthetic wearing time. In terms of activity influence, the majority of prosthesis users received similar ability measures in different activities. Reliability evidence was also satisfactory in terms of test-retest reliability and rater agreements (intra- and interrater).Besides the ACMC, several other prosthetic OMs have been developed in recent years. A comparison of these OMs would help professionals to select appropriate tools for clinical practice. Thus, a comparison of the validated UL prosthetic OMs was performed with an emphasis on what health aspects they cover. Eight OMs were chosen, and their contents were linked to the “International Classification of Functioning, Disability and Health” (ICF). The results showed that the contents from different OMs were linked to the ICF categories in “Body functions,” “Activity and Participation,” and “Environmental Factors.”In conclusion, the use of a mixture of OMs is recommended to cover different aspects of health. Based on the evidence in this thesis, the ACMC can be recommended to measure the ability to control a myoelectric hand.
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5.
  • Ohrvall, Ann-Marie, et al. (author)
  • Self-care and mobility skills in children with cerebral palsy, related to their manual ability and gross motor function classifications
  • 2010
  • In: DEVELOPMENTAL MEDICINE AND CHILD NEUROLOGY. - : Blackwell Publishing Ltd. - 0012-1622 .- 1469-8749. ; 52:11, s. 1048-1055
  • Journal article (peer-reviewed)abstract
    • Aim The aim of this study was to investigate the acquisition of self-care and mobility skills in children with cerebral palsy (CP) in relation to their manual ability and gross motor function. Method Data from the Pediatric Evaluation of Disability Inventory (PEDI) self-care and mobility functional skill scales, the Manual Ability Classification System (MACS), and the Gross Motor Function Classification System (GMFCS) were collected from 195 children with CP (73 females, 122 males; mean age 8y 1mo; SD 3y 11mo; range 3-15y); 51% had spastic bilateral CP, 36% spastic unilateral CP, 8% dyskinetic CP, and 3% ataxic CP. The percentage of children classified as MACS levels I to V was 28%, 34%, 17%, 7%, and 14% respectively, and classified as GMFCS levels I to V was 46%, 16%, 15%, 11%, and 12% respectively. Results Children classified as MACS and GMFCS levels I or II scored higher than children in MACS and GMFCS levels III to V on both the self-care and mobility domains of the PEDI, with significant differences between all classification levels (p andlt; 0.001). The stepwise multiple regression analysis verified that MACS was the strongest predictor of self-care skills (66%) and that GMFCS was the strongest predictor of mobility skills (76%). A strong correlation between age and self-care ability was found among children classified as MACS level I or II and between age and mobility among children classified as GMFCS level I. Many of these children achieved independence, but at a later age than typically developing children. Children at other MACS and GMFCS levels demonstrated minimal progress with age. Interpretation Knowledge of a childs MACS and GMFCS level can be useful when discussing expectations of, and goals for, the development of functional skills.
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6.
  • Tukel, S., et al. (author)
  • Simple Categorization of Human Figure Drawings at 5 Years of Age as an Indicator of Developmental Delay
  • 2019
  • In: Developmental Neurorehabilitation. - : Informa UK Limited. - 1751-8423 .- 1751-8431. ; 22:7, s. 479-486
  • Journal article (peer-reviewed)abstract
    • Purpose: To elucidate the association between developmental stage of human figure drawing(HFD) and fine motor control, visual perception, and further investigate its potential to be used for screening developmental delay. Methods: Participants were 301 children at 51/2 years of age, 176 born preterm and 125 at term, whose HFDs were categorized into six developmental stages. Motor-Free-Visual-Perception Test, Movement-ABC, Performance Intelligence Quotient (PIQ: Wechsler Scale), and the Visual-Motor Integration test were used. Fine motor functions were explored using ImageJ. Results: Age-expected HFDs were drawn by 87% of the children, while 13%, mostly preterm boys, drew immature ones. Stages of HFD were related to both PIQ and Movement-ABC. Visuomotor control and visual perception significantly explained the HFD. The sensitivity and specificity of HFD as a screening tool was moderate to good. Conclusions: HFD is influenced by visual perception and visuomotor control and can be used for screening developmental delay at preschool age.
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7.
  • Öhrvall, Ann-Marie, et al. (author)
  • Exploration of the Relationship Between the Manual Ability Classification System and Hand-Function Measures of Capacity and Performance
  • 2013
  • In: Disability and Rehabilitation. - : Informa Healthcare. - 0963-8288 .- 1464-5165. ; 35:11, s. 913-8
  • Journal article (peer-reviewed)abstract
    • PURPOSE: To further investigate the construct of Manual Ability Classification System (MACS) by evaluating the relationship between children's designated MACS levels and their outcomes on two different tests of hand function, measuring capacity and performance, respectively. Another aim was to use the International Classification of Functioning, Disability and Health-Child and Youth version (ICF-CY) as a framework to explore the uniqueness of the assessments.METHOD: Ninety-one children with cerebral palsy in MACS levels I-V, aged 5-17 years (mean 9.8, SD 3.0) participated. Data were collected using MACS, ABILHAND-Kids and Box and Block Test.RESULTS: A strong association between MACS and ABILHAND-Kids (rs = -0.88, p < 0.05) and MACS and Box and Block Test (rs = -0.81, p < 0.05) was demonstrated. Children's performance differed significantly between the different MACS levels (ABILHAND-Kids F (4:86) = 103.86, p < 0.001, Box and Block Test F (4:86) = 59.18, p < 0.001). The content comparison with ICF-CY, as a frame of reference, showed that these instruments capture fine hand use in the activity and participation component. The linking of the instruments to various ICF-CY categories demonstrated conceptual differences between the instruments. MACS had the broadest representation of ICF-CY domains.CONCLUSIONS: This study strengthens the construct, and thereby the validity, of MACS as a classification of children's hand function, expressed by the handling of objects in everyday activities in their daily environments.IMPLICATIONS FOR REHABILITATION: • This study has strengthened the evidence of Manual Ability Classification System (MACS) as being a valid and useful classification of children's hand function. • The various MACS levels describe different degrees of hand-function impairment. • MACS give a broad description of children's manual ability in a variety of daily life domains.
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8.
  • Öhrvall, Ann-Marie, et al. (author)
  • The stability of the Manual Ability Classification System over time
  • 2014
  • In: Developmental Medicine & Child Neurology. - : Mac Keith Press. - 0012-1622 .- 1469-8749. ; 56:2, s. 185-189
  • Journal article (peer-reviewed)abstract
    • AIM: To evaluate the stability over time of the Manual Ability Classification System (MACS) levels.METHOD: The study group comprised 1267 children with cerebral palsy (746 males, 521 females) who were followed from 2005 to 2010 with two or more registered MACS classifications rated at least 1 year apart. Thirty-five percent of the children (n=445) had four MACS registrations. The children were between 4 and 17 years old at their first rating, The stability over time was also compared between children who were younger (4y of age) or older (≥10y) at the time of their first classification.RESULTS: An excellent stability was found between two ratings at 1-year intervals with an intraclass correlation coefficient (ICC) of 0.97 (95% CI 0.97-0.97) and 82% agreement (n=1267). The stability was also excellent for two ratings performed 3 to 5 years apart (ICC 0.96; 95% CI 0.95-0.97) with an agreement of 78% (n=445). Across four ratings, 70% of the children remained at the same level. The results were similar for younger and older children, indicating that stability was not influenced by age.INTERPRETATION: This study provides evidence that MACS levels are stable over time and that the classification has predictive value.
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9.
  • Amer, Ahmed, 1984- (author)
  • Cross-cultural adaptation and psychometric properties of two questionnaires for the assessment of occupational performance in children with disability : Children's Hand-use Experience Questionnaire (CHEQ) and Pediatric Evaluation of Disability Inventory (PEDI)
  • 2021
  • Doctoral thesis (other academic/artistic)abstract
    • Globally, 93–150 million children live with some form of disability, most of them live in developing countries. Occupational performance describes a person’s ability to execute tasks that are meaningful, in the context in which the person lives. The Children’s Hand-use Experience Questionnaire (CHEQ) and the Pediatric Evaluation of Disability Inventory (PEDI) are measurement tools developed to measure different aspects of occupational performance. However, before using these tools in another cultural context, evidence of validity in that context should be established.The overall aim of this thesis was to investigate the evidence of validity for CHEQ and the Uganda version of PEDI (PEDI-UG).Study I established the validity of revised CHEQ 1.0 for children with unilateral cerebral palsy (CP). The study suggested improvements and inclusion of younger children. This led to the development of CHEQ 2.0, which was culturally adapted and validated for Jordan in Study II. Study III indicated that PEDI-UG had good psychometric properties when tested on typically developing children, and it suggested improvements and further analysis in children with disability. Therefore, study IV investigated the psychometric properties on Ugandan children with CP and confirmed the instrument’s validity. However, the differential item functioning analysis comparing children with CP and typically developing children, and the developmental trajectories for both groups, suggested that a separate conversion table should be used to transform the total sum score from raw scores to a 0–100 scaled score. This thesis shows the importance of cultural adaptations and psychometric validation of measurement tools before they can be used in new cultural contexts. The Arabic CHEQ 2.0and PEDI-UG can be used in the evaluation of rehabilitation interventions and will help to fill the need for measurement tools in these countries.
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10.
  • Amer, Ahmed, 1984-, et al. (author)
  • Cross-cultural adaptation and reliability of the Arabic version of Children's Hand-use Experience Questionnaire (CHEQ)
  • 2022
  • In: Hong Kong Journal of Occupational Therapy. - : Elsevier. - 1569-1861 .- 1876-4398. ; 35:1, s. 84-95
  • Journal article (peer-reviewed)abstract
    • 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 (kappa).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, kappa indicated poor to good agreement (kappa 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.
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