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PURPOSE: The aim of this study was to develop the Japanese version of the ABILHAND-Kids and to examine its psychometric properties for Japanese children with cerebral palsy (CP). METHODS: The experimental version of 75 items was developed using forward-backward translation method. Parents of 137 children with CP answered it. Their responses were analyzed to successive items, and psychometric properties of the final version were investigated through the Rasch measurement model. RESULTS: The Japanese version of the ABILHAND-Kids contained 22 items. It showed valid item-patient targeting, no significant floor and ceiling effects, and no differential item functioning for demographic and clinical subgroups. All items contributed to the definition of one-dimensional measure. For internal consistency, the person separation index was 0.94. For test-retest reliability, the intraclass correlation coefficients were 0.96 (95% CI: 0.92-0.98). The minimal detectable difference was calculated with a logit score of 0.79 and a total raw score of 4.50. The logit score showed a strong correlation with the Manual Ability Classification System level (ρ= -0.70) and the Gross Motor Function Classification System level (ρ= -0.62). CONCLUSIONS: The Japanese version of the ABILHAND-Kids was found to be valid and reliable. It appears to be a good tool for assessing manual abilities in daily activities in children with CP.
Impairment of upper limb function affects participation and quality of life in children with cerebral palsy, and adequate assessment tools are essential to appropriate planning and evaluation of interventions.The Japanese version of the ABILHAND-Kids is a valid and reliable measure of manual ability in children with cerebral palsy.The Japan-specific items and calibrations allows for evaluation that takes Japanese culture into consideration.
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PURPOSE: ABILHAND-Kids is a structured parent report that assesses manual ability in activities of daily living in children with cerebral palsy, and also brachial plexus birth injury (BPBI). This study investigated the validity, test-retest reliability, and internal consistency of the ABILHAND-Kids in children with BPBI. MATERIALS AND METHODS: The ABILHAND-Kids was administered to parents of 119 children with BPBI between 6 and 15 years for validity and internal consistency, also 92 parents were re-interviewed after two weeks to establish test-retest reliability. Its concurrent validity was examined by correlating scores on the ABILHAND-Kids with Active Movement Scale-Total Score. RESULTS: ABILHAND-Kids were strongly correlated with AMS-Total score (p < 0.001, r = 0.87) ABILHAND-Kids test-retest reliability was excellent (ICC: 0.93, %95 CI: 0.90-0.95). The internal consistency for the total score of ABILHAND-Kids was excellent (alpha = 0.94). For 20 items, item-total correlations were adequate (corrected item-total correlations, 0.27-0.85), one item which was "switching on a bedside lamb" had no adequate correlation (corrected item-total correlations, 0.011). The ABILHAND-Kids score showed a statistically significant difference between the Narakas types (p < 0.001). CONCLUSION: The ABILHAND-Kids has excellent reliability and strong validity for measuring manual ability or bimanual performance in activities of daily living in children with BPBI.
ABILHAND-Kids is a valuable tool for assessing bimanual activities in children with Brachial Plexus Birth Injury.ABILHAND-Kids is valid in both concurrent and discriminative validity in children with Brachial Plexus Birth Injury.ABILHAND-Kids is reliable in children with Brachial Plexus Birth Injury.ABILHAND-Kids assesses bimanual performance in real-life activities and offers valuable insights for treatment planning in Brachial Plexus Birth Injury.
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BACKGROUND: Recovery of manual ability is a critical issue in rehabilitation. Currently, little is known regarding the baseline predictors of self-perceived manual ability, which could capture information on individual's perceived functional ability, especially in carrying-out routine tasks outside clinical settings. OBJECTIVE: To identify baseline predictors, which can be easily obtained within clinical settings, of self-perceived manual ability at three and six months after discharge from a stroke unit. METHODS: A 6-month longitudinal study was carried-out. Participants were recruited from a stroke unit of a public hospital. The dependent outcome was self-perceived manual ability, and the following predictors were investigated: age, stroke severity, upper-limb motor impairments, cognitive function, muscle strength, and functional capacity. Linear regression analyses were employed to identify multivariate predictors of manual ability at three and six months after discharge (α=5%). RESULTS: Participated 131 individuals, 69 women (mean age of 60 years). Regression analyses revealed that stroke severity and age accounted for 31% and 47% of the variance in manual ability at three and six months after stroke, respectively. Stroke severity was the best predictor of manual ability at three (R2=29%; F=44.7; p<0.0001) and six months (R2=45%; F=88.2; p<0.0001) after stroke, respectively. CONCLUSION: Stroke severity showed to be the best predictor of manual ability at both three and six months after stroke. Although significant, age added little to the explained variance.
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Reabilitação do Acidente Vascular Cerebral , Acidente Vascular Cerebral , Feminino , Humanos , Pessoa de Meia-Idade , Estudos Longitudinais , Estudos Prospectivos , Recuperação de Função Fisiológica/fisiologia , Acidente Vascular Cerebral/diagnóstico , Acidente Vascular Cerebral/terapia , Reabilitação do Acidente Vascular Cerebral/psicologia , Extremidade Superior , MasculinoRESUMO
BACKGROUND: Individuals with unilateral spastic cerebral palsy (USCP) often show difficulties using their hands during activities of daily living. OBJECTIVE: To investigate the factors that interfere with hand use during bimanual activities in children and adolescents with USCP. METHODS: We conducted a cross-sectional study with 102 children and adolescents with USCP, aged 6 to 18 years. We collected information with the caregivers about the classification of the child's manual ability, according to the Manual Ability Classification System (MACS); child's age; side of the involvement; Children's Hand-Use Experience Questionnaire- CHEQ2.0. Cluster analysis identified groups of children and adolescents who performed CHEQ activities with or without assistance. Multiple linear regression analyses identified the contribution of the factors: age, sex, MACS level, side of hemiparesis, and clusters of assistance, on the outcomes of efficacy, time, and feeling bothered. RESULTS: MACS and clusters of assistance explained the variance in efficacy (p<0.05; R2=0.31) and time (p<0.05; R2=0.37). MACS explained 22% of the variance in feeling bothered. Children and adolescents with increased difficulty to perform activities that involve hand use (i.e., MACS III) and who receive assistance during most bimanual activities showed less efficacy of use, were slower in their performance, and presented greater feeling of being bothered. CONCLUSION: Assistance in bimanual activities and MACS level contributed to explain the efficacy of use, time, and feeling bothered in performing bimanual activities. Intervention strategies aimed at promoting the performance of bimanual activities in the daily routine of children with USCP should consider these outcomes.
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Paralisia Cerebral , Criança , Humanos , Adolescente , Atividades Cotidianas , Estudos Transversais , Mãos , Extremidade SuperiorRESUMO
Manual ability may be an important consideration when measuring cognition in children with CP because many items on cognitive tests require fine motor skills. This study investigated the association of fine motor dependent (FMD) and fine motor independent (FMI) items within the cognitive domain (COG) of the Bayley Scales of Infant Development-Third Edition (Bayley-III) and Manual Ability Classification System (MACS) in children with cerebral palsy. Children aged 2 to 8 (3.96 ± 1.68) years were included in this study. MACS levels were assigned at baseline. COG was administrated at baseline (n = 61) and nine months post-baseline (n = 28). The 91 items were classified into FMD (52) and FMI (39). Total raw score, FMD, and FMI scores were calculated. The association between MACS and cognitive scores (total, FMD, and FMI) were evaluated using linear regression and Spearman correlation coefficients. We found total, FMD, and FMI scores decrease significantly as the MACS level increases at the baseline. Both FMD and FMI scores decreased as MACS levels increased (worse function). There was a significant difference between the two slopes, with the FMD scores having a steeper slope. Similar patterns were observed nine months post-baseline. Children with lower manual ability scored lower in the cognitive domain at baseline and 9 months post-baseline. The significant difference in the performance of FMD items and FMI items across MACS levels with a steeper slope of changes in FMD items suggests fine motor skills impact cognition.
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PURPOSE: The study sought to examine the content validity, the intra- and inter-rater reliability, and concurrent validity of the Japanese versions of the Manual Ability Classification System, the Communication Function Classification System, and the Eating and Drinking Ability Classification System, and representation of the distribution of the levels of each classification systems in comparison to the Gross Motor Function Classification System levels for children with cerebral palsy. METHODS: The Japanese versions were developed using the back-translation method. For content validity, professionals were asked to complete a questionnaire including items on the appropriateness of the translation, its validity, and distinctions among levels. For reliability, professionals used the three classification systems twice in children with cerebral palsy. For concurrent validity, relationships among the four classification systems were examined by correlation analyses. RESULTS: Participants included twenty-one professionals and 290 children with cerebral palsy (mean age: 12 years two months, female: 132, male: 158). The content validity was generally good. For reliability, the lower limit of the 95% confidence interval for the intraclass correlation coefficients was greater than 0.89, and the correlation coefficients were high. CONCLUSION: The results of this study showed good reliability and validity of the functional classification systems in Japan.
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Paralisia Cerebral , Humanos , Masculino , Criança , Feminino , Psicometria , Japão , Reprodutibilidade dos Testes , Avaliação da DeficiênciaRESUMO
Background: Mini-Manual Ability Classification System (Mini-MACS) was developed for children with cerebral palsy aged 1-4 years, but its validity and reliability in different cultures are unavailable yet. This study was to determine the reliability and validity of Mini-MACS in East Asian children with cerebral palsy and investigate the correlation between Mini-MACS and Gross Motor Function Classification System. Methods: One hundred and four East Asian children with cerebral palsy aged 12-48 months were classiï¬ed by one of their parents, an occupational therapist, and a physical therapist with Mini-MACS. The results were analyzed for inter-rater reliability by using intraclass correlation coefficient (ICC). The Nine-hole Peg Test was used for the criterion-related validity analysis, and parents retested their children after 2 weeks to evaluate test-retest reliability. Gross Motor Function Classification System levels were also collected to investigate the correlation with Mini-MACS. Results: Good inter-rater reliability among the occupational therapist, physical therapist, and parents was found [ICC = 0.984 (95% confidence interval, CI, 0.976-0.989), 0.973 (95% CI 0.960-0.982), and 0.966 (95% CI 0.950-0.977), respectively; p < 0.01]. The test-retest reliability in parents was almost perfect [ICC = 0.985 (95% CI 0.977-0.990), p < 0.01]. Mini-MACS had consistency with the Nine-hole Peg Test (r = 0.582, 0.581, and 0.566, respectively; p < 0.01). A correlation was found between Gross Motor Function Classification System and Mini-MACS (r = 0.626, 0.596, and 0.598, respectively; p < 0.01). Conclusion: The Mini-MACS demonstrates evidence that it is a valid and reliable tool to classify manual ability in East Asian children with cerebral palsy and is also positively related to the Gross Motor Function Classification System.
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INTRODUCTION: The Mini-Manual Ability Classification System (Mini-MACS) is an adaptation of the MACS for children with cerebral palsy (CP) aged 1-4 years, which classifies children's performance to handle objects that are relevant to their age and development. The availability of a reliable Mini-MACS in Greek would allow for using it safely and properly in the clinical and research context of Greece. Therefore, the purpose of this study was to translate the original English version into Greek and examine its test-retest and interrater reliability. MATERIAL AND METHODS: The English Mini-MACS was translated into Greek using the "forward-backward" method. Sixty-three children with CP, Gross Motor Function Classification System (GMFCS) levels I-V, aged 12 -50 months were included in the reliability study. Test-retest and interrater reliability were assessed using the interclass correlation coefficient (ICC). The association between Mini-MACS and GMFCS level ratings was also assessed using Spearman's rho correlation coefficient (ρ). RESULTS: The translated version was easy to understand and use. The Greek Mini-MACS was found to have excellent test-retest reliability (ICC > 0.96) for both parents and therapists, good interrater reliability (ICC=0.89) between therapists and parents, and moderate-to-strong correlation with the GMFCS (ρ = 0.56-0.64, p < 0.0001). CONCLUSION: The Greek Mini-MACS constitutes a user-friendly and reliable scale for use in the Greek population.
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PURPOSE: To translate and cross-culturally adapt the ABILHAND-Kids questionnaire into Danish and assess its psychometric properties in children with cerebral palsy (CP). MATERIALS AND METHODS: A Danish version of the parent-reported ABILHAND-Kids questionnaire was created through a standardized translation process. Dimensionality (confirmatory factor analysis), reliability, smallest detectable change, floor and ceiling effects, and Rasch analysis were carried out. RESULTS: One-hundred-and-fifty children diagnosed with CP were included. No parent had difficulty completing the ABILHAND-Kids (DK). Psychometric testing demonstrated a unidimensional scale, excellent test-retest reliability (ICC2.1A = 0.97) and internal consistency (α = 0.96). A smallest detectable change of 5.15 points was considered acceptable. One item showed Differential Item Functioning, four pairs of items showed signs of local dependence and one item had disordered thresholds. Nevertheless, analyses did not lead to the removal of any items. Item thresholds covered most levels of person abilities. Lastly, 24.7% scored within measurement error at the ceiling of the scale, indicating that it was not possible to measure further improvement. CONCLUSION: ABILHAND-Kids (DK) seems to be a valid, reliable and comprehensive measurement scale to assess manual ability in children with CP. It can be used in goal setting and to inform future interventions and rehabilitation evaluation.IMPLICATIONS FOR REHABILITATIONImpaired hand function leads to limited participation in activities of everyday life in children with cerebral palsy.Adequate outcome measures of hand function are crucial for the planning and evaluation of interventions.The Danish version of ABILHAND-Kids is a valid and reliable measure of manual ability in children with cerebral palsy, and it can be used in clinical practice and for research purposes.
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Paralisia Cerebral , Paralisia Cerebral/reabilitação , Criança , Dinamarca , Avaliação da Deficiência , Humanos , Psicometria , Reprodutibilidade dos Testes , Inquéritos e QuestionáriosRESUMO
PURPOSE: This cross-sectional study aimed to identify determinants of manual abilities of children with cerebral palsy (CP), as measured by the Manual Ability Classification System (MACS), in terms of intrinsic (child-related) and extrinsic (service-related) variables. METHODS: The participants were 106 children with a confirmed diagnosis of CP (aged 4-16 years). Two ordinal logistic regression models were conducted to identify intrinsic and extrinsic determinants of manual abilities. RESULTS: Four child-related (intrinsic) variables were found to be significant determinants of manual abilities: bimanual ability, ability to maintain and assume chair sitting, presence of seizures, and gross motor function, and only one service-related (extrinsic) significant variable was identified, which was receiving spasticity medications. DISCUSSION: The results highlight several determinants that should be considered when assessing and intervening to improve manual abilities of children with CP. The findings are discussed in relation to the intervention approach, contextual modification, and assistive device prescription.
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Paralisia Cerebral , Adolescente , Criança , Pré-Escolar , Estudos Transversais , Humanos , Destreza Motora , Espasticidade Muscular , Sistema de RegistrosRESUMO
PURPOSE: To develop and cross-culturally validate the Ukrainian version of the ABILHAND-Kids questionnaire by testing its psychometric properties in a sample of Ukrainian children with cerebral palsy. METHODS: The ABILHAND-Kids questionnaire was translated into Ukrainian, cross-culturally adapted, and administered to 113 parents of children with cerebral palsy. The psychometric properties of the Ukrainian version and its cross-cultural validation were investigated through the Rasch rating scale model. RESULTS: One major misfit has been found for the item "Rolling up a sleeve of a sweater" that further was removed. The item "Putting on a backpack/schoolbag" was split into gender-specific items, separately for girls and for boys, as it was systematically easier for Ukrainian girls. All remaining items contributed to the definition of a unidimensional measure of manual ability. The internal consistency reliability of the scale was high (R = 0.95). No significant floor (4%) and ceiling effects (5%) were observed. Three major differential item functioning items were found across Belgium and Ukraine, highlighting the need to use the Ukrainian calibration of ABILHAND-Kids in Ukraine. CONCLUSION: The Ukrainian ABILHAND-Kids questionnaire has good psychometric properties for assessing manual ability in Ukrainian children with cerebral palsy, holding potential to be implemented in clinical practice nationwide.Implications for rehabilitationCerebral palsy impairs manual ability leading to decreased quality of life and participation.Professionals need valid and reliable tools to detect small changes of manual ability during rehabilitation.Metric properties and availability of the Ukrainian version of the ABILHAND-Kids questionnaire make it a useful tool in the assessment of children with cerebral palsy.
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Comparação Transcultural , Qualidade de Vida , Bélgica , Criança , Avaliação da Deficiência , Feminino , Humanos , Masculino , Psicometria , Reprodutibilidade dos Testes , Inquéritos e QuestionáriosRESUMO
PURPOSE: The functional use of the upper extremities in daily living activities has become important in the later ages with the increasing life expectancy of patients with Duchenne muscular dystrophy (DMD). This study aimed to assess manual ability and upper limb performance of nonambulatory children with DMD, and to determine their relationship with factors that might affect ability and performance. METHODS: Manual ability was determined via the ABILHAND-Kids questionnaire and upper limb performance was assessed with the Performance of Upper Limb (PUL) test. Possible related factors such as functional level, steroid usage, upper limb range of motion (ROM), thumb opposition, upper limb muscular strength, and grip strength were evaluated. Correlations of related factors with manual ability and upper limb performance were analyzed. RESULTS: The mean age of 23 nonambulatory DMD children was 13.04±1.39 years. Moderate impairments were determined according to the ABILHAND-Kids and PUL, with scores of 26.30±10.74 and 46.22±15.02, respectively. The functional level, steroid usage, duration of wheelchair use, upper extremity ROM, and global upper limb muscle strength of children were weak-to-strongly correlated with at least one score of ABILHAND-Kids and PUL (P<0.05). CONCLUSION: Children with DMD may already have severe proximal and mid-level upper extremity involvement, even reflected in distal functions, at the time when they progress to the nonambulatory stage. Besides muscular strength, many related factors should be taken into account for therapists to assess and treat upper limb performance at later stages of DMD.
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Distrofia Muscular de Duchenne/fisiopatologia , Extremidade Superior/fisiopatologia , Atividades Cotidianas , Adolescente , Criança , Avaliação da Deficiência , Feminino , Humanos , Masculino , Limitação da Mobilidade , Força Muscular , Estudos Prospectivos , Amplitude de Movimento ArticularRESUMO
Manual dexterity has strongly predicted functional independence for daily life activities among children with cerebral palsy (CP). The Jebsen-Taylor Hand Function Test (JTHFT) is the most widely used assessment tool for exploring manual dexterity in the CP population, though no research has yet examined its psychometric properties for this use. This cross-sectional study explored the validity and internal consistency of the JTHFT in an Italian sample of inpatient and outpatient children with CP aged between 6-18 years (35 girls and 49 boys). We calculated internal consistency with Cronbach's alpha and tested validity against the Manual Ability Classification System (MACS) using Pearson's correlation coefficient. To better understand how the JTHFT compares with different levels of the MACS, we performed dominant hand timing variability for each test item. Results showed excellent internal consistency with a Cronbach's alpha of .944 and .911, respectively, for nondominant and dominant hands. There was also a statistically significant positive linear Pearson's correlation coefficient between the JTHFT and the MACS (p < .01). We observed high variability in writing performance (Item 1 of the JTHFT) within this sample for each level of the MACS. This study confirms that the JTHFT is a valid assessment tool when used in children with CP aged 6-18 years.
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Paralisia Cerebral/fisiopatologia , Mãos/fisiopatologia , Adolescente , Criança , Estudos Transversais , Avaliação da Deficiência , Feminino , Humanos , Itália , Masculino , Psicometria , Reprodutibilidade dos TestesRESUMO
Purpose: To cross-culturally adapt the ABILHAND-Kids into Arabic and to examine its measurement properties in children with cerebral palsy.Materials and methods: The Cross-cultural adaption of the ABILHAND-Kids into Arabic language included forward translation, backward translation, expert committee followed by preliminary testing. Structural validity using Rasch analysis, internal consistency, test-retest reliability, measurement error, and construct validity of the Arabic ABILHAND-Kids were examined in children with cerebral palsy (N = 154; 54% male, mean age 7.4 years).Results: Rasch analysis did not support the structural validity of the Arabic ABILHAND-Kids mainly due to response dependency. Removal of two items addressed the issue of the response dependency and resulted in a unidimensional scale meeting the requirement of the Rasch model. The scale had excellent internal consistency (Person Separation Index = 0.93) and excellent test-retest reliability (intraclass correlation coefficient = 0.98). The results supported 86% of the predefined hypotheses regarding correlation of the Arabic ABILHAND-Kids with the manual ability classification system, gross motor function classification system and the functional independence measure for children.Conclusion: The Arabic ABILHAND-Kids demonstrated adequate evidence supporting its structural validity as a unidimensional measure along with evidence supporting its internal consistency, test-retest reliability and construct validity as a measure of manual ability in children with cerebral palsy.Implications for rehabilitationThe Arabic ABILHAND-Kids is a reliable and valid measure of manual ability in children with cerebral palsy.The Arabic ABILHAND-Kids can be used to quantify manual ability in children with cerebral palsy in clinical practice and for research purposes.
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Comparação Transcultural , Idioma , Criança , Avaliação da Deficiência , Feminino , Humanos , Masculino , Psicometria , Reprodutibilidade dos Testes , Inquéritos e Questionários , TraduçõesRESUMO
INTRODUCTION: Children with bilateral cerebral palsy often experience difficulties with posture, gross motor function and manual ability, impacting independence in daily life activities, participation and quality of life (QOL). Hand-Arm Bimanual Intensive Training Including Lower Extremity (HABIT-ILE) is a novel intensive motor intervention integrating upper and lower extremity training. This study aimed to compare HABIT-ILE to usual care in a large randomised controlled trial (RCT) in terms of gross motor function, manual ability, goal attainment, walking endurance, mobility, self-care and QOL. A within-trial cost-utility analysis will be conducted to synthesise costs and benefits of HABIT-ILE compared with usual care. METHODS AND ANALYSIS: 126 children with bilateral cerebral palsy aged 6-16 years will be recruited across three sites in Australia. Children will be stratified by site and Gross Motor Function Classification System and randomised using concealed allocation to either receiving HABIT-ILE immediately or being waitlisted for 26 weeks. HABIT-ILE will be delivered in groups of 8-12 children, for 6.5 hours per day for 10 days (total 65 hours, 2 weeks). Outcomes will be assessed at baseline, immediately following intervention, and then retention of effects will be tested at 26 weeks. Primary outcomes will be the Gross Motor Function Measure and ABILHAND-Kids. Secondary outcomes will be brain structural integrity, walking endurance, bimanual hand performance, self-care, mobility, performance and satisfaction with individualised goals, and QOL. Analyses will follow standard principles for RCTs using two-group comparisons on all participants on an intention-to-treat basis. Comparisons between groups for primary and secondary outcomes will be conducted using regression models. ETHICS AND DISSEMINATION: Ethics approval has been granted by the Medical Research Ethics Committee of Children's Health Queensland Hospital and the Health Service Human Research Ethics Committee (HREC/17/QRCH/282) of The University of Queensland (2018000017/HREC/17/QRCH/2820), and The Cerebral Palsy Alliance Ethics Committee (2018_04_01/HREC/17/QRCH/282). TRIAL REGISTRATION NUMBER: ACTRN12618000164291.
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Paralisia Cerebral , Terapia por Exercício/métodos , Extremidade Inferior/fisiopatologia , Modalidades de Fisioterapia , Qualidade de Vida , Extremidade Superior/fisiopatologia , Atividades Cotidianas , Adolescente , Paralisia Cerebral/fisiopatologia , Paralisia Cerebral/psicologia , Paralisia Cerebral/terapia , Criança , Feminino , Humanos , Masculino , Atividade Motora , Destreza Motora , Avaliação de Processos e Resultados em Cuidados de Saúde , Ensaios Clínicos Controlados Aleatórios como AssuntoRESUMO
AIM: To investigate health-related quality of life (HRQOL) and manual ability five years after neonatal arterial ischemic stroke (NAIS). METHODS: Data was prospectively obtained by the Swiss Neuropaediatric Stroke Registry between 2000 and 2010. Two years after NAIS, cognitive and motor outcomes was assessed using the Bayley Scales of Infant Development (BSID-II). After 5 years, HRQOL was assessed with the KIDSCREEN-27 and manual ability with the ABILHAND-Kids. Manual ability and HRQOL were compared between children with and without cerebral palsy (CP) and HRQOL was correlated with manual ability. RESULTS: Seventy-four patients were examined at the age of 2 years, at the age of 5 years 61 patients underwent a follow-up examination. Two years after NAIS, 29 children (39.1%) were diagnosed with CP. HRQOL 5 years after NAIS was comparable to normative values. Children with CP had a significantly lower HRQOL-index (p = 0.013) and lower scores in the subscale psychological well-being (p = 0.012) and social support & peers (p = 0.048). The ABILHAND-Kids measure was significantly lower in children with CP compared to children without CP (p < 0.001). Manual ability correlated significantly with HRQOL. CONCLUSION: Five years after NAIS, HRQOL is comparable to that of typically developing peers, but reduced in children with CP. Poorer manual ability is associated with lower HRQOL. Interventions improving hand function might influence HRQOL and should be considered early on.
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Qualidade de Vida , Recuperação de Função Fisiológica , Acidente Vascular Cerebral/complicações , Isquemia Encefálica/complicações , Paralisia Cerebral/etiologia , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Recém-Nascido , MasculinoRESUMO
OBJECTIVES: Participation is a complex and context-dependent concept, which several factors can influence it. The aim of this study was assessing the relationship between the upper extremity function level of children with cerebral palsy (all type of cerebral palsy and severity) and their participation in different life areas. MATERIALS & METHODS: This cross-sectional study assessed the relationship between the level of upper extremity function of cerebral palsy children and their participation in different life areas. Participants were 274 parents of children with cerebral palsy of the schools of children with special needs and occupational therapy clinics in Tehran, Iran in 2018. They completed the Manual Ability Classification System (MACS) to determine the level of upper extremity function of children with cerebral palsy and Children Participation Assessment Scale-Parent version (CPAS-P) (to determine the participation level of children with cerebral palsy) questionnaires separately. RESULTS: The mean age of children was 8 yr and 8 months old (at least 6 yr and maximum 12 yr). The correlation between the level of upper extremity function and the overall score of each dimension of participation is significant (P<0.05) and moderate. CONCLUSION: The upper extremity function of children with cerebral palsy has a moderate and significant relationship with the participation of children with cerebral palsy in different life areas and with different dimensions of participation especially parental satisfaction dimension. Therefore, there is a correlation between upper extremity function and participation in occupations, but this relationship is moderate and is not very strong.
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OBJECTIVE: To explore participation in social roles of adolescents (aged 12-18y) with cerebral palsy (CP), in terms of satisfaction compared with accomplishment. DESIGN: Cohort study as part of a prospective longitudinal research program. SETTING: Clinic. PARTICIPANTS: Participants were adolescents (N=45; 58% male, mean age 15y 6mo) with CP at levels I-II (88%) and III-IV-V (12%) of the Gross Motor Function Classification System. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Accomplishment (0-9 scale; with score <8 "having difficulties") and satisfaction (1-5 scale; with score 3 "neutral") were assessed using the Life-Habits questionnaire, on 6 domains (Responsibilities, Interpersonal relationships, Community life, Education, Employment, Recreation). Per domain, we analyzed scatterplots of accomplishment vs satisfaction. Additionally, we compared determinant-models (including factors of CP, activity, person, and environment) using regression analysis. RESULTS: For accomplishment, mean scores were <8.00 except for Interpersonal relationships. For satisfaction, mean scores varied between 3.85 and 4.34. Overall, individuals with similar levels of accomplishment showed large ranges in their levels of satisfaction, which was expressed by low explained variances, especially on Education (6%). Furthermore, different sets of determinants were found for accomplishment (predominantly CP factors) compared with satisfaction (predominantly environment factors). CONCLUSIONS: This study revealed a dissociation between participation accomplishment and satisfaction with participation among adolescents with CP. For practice and research, we recommend not only to focus on accomplishment but also, if not mainly, on satisfaction.
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BACKGROUND: Cerebral palsy (CP) is the most common cause of physical disability in childhood. A major challenge for delivering effective services for children with CP is the heterogeneity of the medical condition. Categorizing children into homogeneous groups based on functional profiles is expected to improve service planning. The aims of this study were to (1) to describe functional profiles of children with CP based on the Gross Motor Function Classification System-Expanded & Revised (GMFCS-E & R) and the Manual Ability Classification System (MACS); and (2) to examine associations and agreements between the GMFCS-E & R and the MACS for all participants then for subgroups based on subtypes of CP and chronological age of children. METHODS: A convenience sample of 124 children with CP (mean age 4.5, SD 2.9 years, 56% male) participated in the study. Children were classified into the GMFCS-E & R and the MACS levels by research assistants based on parents input. Research assistants determined the subtypes of CP. RESULTS: Thirty six percent of the participants were able to ambulate independently (GMFCS-E & R levels I-II) and 64% were able to handle objects independently (MACS levels I-II). The most common functional profile of children with CP in our study is the "manual abilities better than gross motor function". An overall strong correlation was found between the GMFCS-E & R and the MACS (rs = .73, p < .001), the correlations vary significantly based on subtypes of CP and chronological age of children. A very strong correlation was found in children with spastic quadriplegia (rs = .81, p < .001), moderate with spastic diplegia (rs = .64, p < .001), and weak with spastic hemiplegia (rs = .37, p < .001). CONCLUSIONS: The GMFCS- E & R and the MACS provide complementary but distinctive information related to mobility and manual abilities of children with CP. Subtypes of CP and chronological age differentiated functional profiles. Functional abilities of children with CP in Jordan have similar patterns to children with CP in other countries. Functional profiles can inform clinicians, researchers, and policy makers.
Assuntos
Paralisia Cerebral/fisiopatologia , Avaliação da Deficiência , Destreza Motora , Adolescente , Paralisia Cerebral/classificação , Criança , Pré-Escolar , Comorbidade , Feminino , Humanos , Jordânia , Masculino , Limitação da Mobilidade , Destreza Motora/classificação , Índice de Gravidade de Doença , Análise e Desempenho de TarefasRESUMO
BACKGROUND: ABILHAND, a manual ability patient-reported outcome instrument originally developed for stroke patients, has been used in multiple sclerosis clinical trials; however, psychometric analyses indicated the measure's limited measurement range and precision in higher-functioning multiple sclerosis patients. OBJECTIVE: The purpose of this study was to identify candidate items to expand the measurement range of the ABILHAND-56, thus improving its ability to detect differences in manual ability in higher-functioning multiple sclerosis patients. METHODS: A step-wise mixed methods design strategy was used, comprising two waves of patient interviews, a combination of qualitative (concept elicitation and cognitive debriefing) and quantitative (Rasch measurement theory) analytic techniques, and consultation interviews with three clinical neurologists specializing in multiple sclerosis. RESULTS: Original ABILHAND was well understood in this context of use. Eighty-two new manual ability concepts were identified. Draft supplementary items were generated and refined with patient and neurologist input. Rasch measurement theory psychometric analysis indicated supplementary items improved targeting to higher-functioning multiple sclerosis patients and measurement precision. The final pool of Early Multiple Sclerosis Manual Ability items comprises 20 items. CONCLUSION: The synthesis of qualitative and quantitative methods used in this study improves the ABILHAND content validity to more effectively identify manual ability changes in early multiple sclerosis and potentially help determine treatment effect in higher-functioning patients in clinical trials.