| 1. |
- Arnaud, C., et al.
(författare)
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Determinants of participation and quality of life of young adults with cerebral palsy: longitudinal approach and comparison with the general population - SPARCLE 3 study protocol
- 2021
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Ingår i: BMC Neurology. - : Springer Science and Business Media LLC. - 1471-2377. ; 21:1
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Effective inclusion in society for young people with disabilities is increasingly seen as generating opportunities for self-development, and improving well-being. However, significant barriers remain in the vast majority of activities meaningful for young adults. Research argues that various personal (disabilities, health) and environmental (access to the resources needed, accessible environment, discrimination, lack of personal economic independence) factors contribute to limited participation. However, previous studies conducted in young people with cerebral palsy (CP) mainly investigated the transition period to adulthood, and did not fully consider the whole range of impairment severity profiles or environmental barriers. In this study, we will use the follow-up of the SPARCLE cohort and a comparison group from the general population (1) to investigate the impact of the environment on participation and quality of life of young adults with CP, (2) to determine predictors of a successful young adulthood in educational, professional, health and social fields, (3) to compare quality of life and frequency of participation in social, work and recreational activities with the general population, (4) to document on participation and quality of life in those with severe disabilities. METHODS: The SPARCLE3 study has a combined longitudinal and cross-sectional design. Young adults with CP aged 22 to 27years in 6 European regions previously enrolled in the SPARCLE cohort or newly recruited will be invited to self-complete a comprehensive set of questionnaires exploring participation (daily life and discretionary activities), health-related quality of life, body function, personal factors (health, personal resources), and contextual factors (availability of needed environmental items, family environment, services provision) during home visits supervised by trained researchers. Proxy-reports or adapted questionnaires will be used for those with the most severe impairments. The recruitment of a large group from the general population (online survey) will enable to identify life areas where the discrepancies between young people with CP and their able-bodied peers are the most significant. DISCUSSION: This study will help identify to what extent disabilities and barriers in environment negatively affect participation and quality of life, and how previous valued experiences during childhood or adolescence might modulate these effects.
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| 2. |
- Arnaud, C., et al.
(författare)
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Public health indicators for cerebral palsy: A European collaborative study of the Surveillance of Cerebral Palsy in Europe network
- 2023
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Ingår i: Paediatric and Perinatal Epidemiology. - : Wiley. - 0269-5022 .- 1365-3016. ; 37:5, s. 404-412
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundPublic health indicators (PHIs) play an increasingly important role in health policy decision-making. Although cerebral palsy (CP) is the commonest physical disability in children, its impact at population level has not been systematically measured so far. ObjectivesWe aimed to propose six PHIs for CP designed to annually document the extent of CP and effectiveness of perinatal organisation, the burden of this condition, access to health services and preventive health strategies in the post-neonatal period and to report on the latest updated estimations using population-based data routinely collected by European CP registries. MethodsThe study included children with CP born between 2002 and 2011. Harmonised data (number of cases, functional profile, imaging) were extracted from the Surveillance of Cerebral Palsy in Europe (SCPE) database. Eligibility criteria for analyses were applied separately for each indicator by selecting registries, birth years and CP cases. Current estimates were based on the last 3 birth years, while trends were reported over a 10-year period. All analyses were descriptive. Sensitivity analyses were carried out to examine the stability of the results using various thresholds of percentages of missing values. ResultsAnalyses were performed on a total of 8621 children with CP from 12 to 17 SCPE registries. A decreasing prevalence of pre/perinatal CP overall, as well as in preterm and full-term-born children, was observed. The burden of the condition was strongly dependent on CP subtype and the presence of associated impairments. Access to brain imaging ranged from 80% to 100% depending on registries. The overall prevalence of post-neonatally acquired CP was approximately 0.8 per 10,000 live births over the study period. ConclusionsPopulation-based CP registries can provide data that are relevant for generating key outcomes of interest at the population level, thus potentially contributing to improving public health policies for children with disabilities.
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| 3. |
- Arnaud, C., et al.
(författare)
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Trends in Prevalence and Severity of Pre/Perinatal Cerebral Palsy Among Children Born Preterm From 2004 to 2010: A SCPE Collaboration Study
- 2021
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Ingår i: Frontiers in Neurology. - : Frontiers Media SA. - 1664-2295. ; 12
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Tidskriftsartikel (refereegranskat)abstract
- Aim: To report on prevalence of cerebral palsy (CP), severity rates, and types of brain lesions in children born preterm 2004 to 2010 by gestational age groups. Methods: Data from 12 population-based registries of the Surveillance of Cerebral Palsy in Europe network were used. Children with CP were eligible if they were born preterm (<37 weeks of gestational age) between 2004 and 2010, and were at least 4 years at time of registration. Severity was assessed using the impairment index. The findings of postnatal brain imaging were classified according to the predominant pathogenic pattern. Prevalences were estimated per 1,000 live births with exact 95% confidence intervals within each stratum of gestational age: <= 27, 28-31, 32-36 weeks. Time trends of both overall prevalence and prevalence of severe CP were investigated using multilevel negative binomial regression models. Results: The sample comprised 2,273 children. 25.8% were born from multiple pregnancies. About 2-thirds had a bilateral spastic CP. 43.5% of children born <= 27 weeks had a high impairment index compared to 37.0 and 38.5% in the two other groups. Overall prevalence significantly decreased (incidence rate ratio per year: 0.96 [0.92-1.00[) in children born 32-36 weeks. We showed a decrease until 2009 for children born 28-31 weeks but an increase in 2010 again, and a steady prevalence (incidence rate ratio per year = 0.97 [0.92-1.02] for those born <= 27 weeks. The prevalence of the most severely affected children with CP revealed a similar but not significant trend to the overall prevalence in the corresponding GA groups. Predominant white matter injuries were more frequent in children born <32 weeks: 81.5% (<= 27 weeks) and 86.4% (28-31 weeks), compared to 63.6% for children born 32-36 weeks. Conclusion: Prevalence of CP in preterm born children continues to decrease in Europe excepting the extremely immature children, with the most severely affected children showing a similar trend.
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| 4. |
- Bagazgoitia, N. V. D., et al.
(författare)
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Quality of Life in Young Adults With Cerebral Palsy: A Longitudinal Analysis of the SPARCLE Study
- 2021
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Ingår i: Frontiers in Neurology. - : Frontiers Media SA. - 1664-2295. ; 12
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Tidskriftsartikel (refereegranskat)abstract
- Introduction: While most people with cerebral palsy (CP) will have a life expectancy similar to that of the general population, international research has primarily focused on childhood and adolescence; and knowledge about the quality of life (QoL) of young adults with CP, its trajectories, and associated factors remains scarce.Methods: This longitudinal study included young adults with CP living in five European regions and who had previously participated in the SPARCLE cohort as children and/or adolescents. Their QoL in the psychological well-being and social relationships domains was estimated using age-appropriate validated instruments (KIDSCREEN-52 in childhood/adolescence and WHOQOL-Bref in young adulthood). We used generalized linear mixed-effect models with random intercept to estimate long-term trajectories of QoL in both domains and to investigate whether severity of impairment, pain, and seizure influenced these trajectories. We sought to identify potentially different trajectories of QoL from childhood to adulthood using a shape-based clustering method.Results: In total, 164 young adults with CP aged 22-27 years participated in the study. Psychological well-being linearly decreased by 0.78 points (scale 0-100) per year (95% confidence interval (CI) -0.99 to -0.56) from childhood to young adulthood, whereas QoL in the social relationships domain increased (beta coefficient 1.24, 95% CI 0.92-1.55). Severity of impairment was associated with reduced QoL in all life periods of the study (childhood, adolescence, and young adulthood): motor impairment with social relationships, and more nuancedly intellectual disability with psychological well-being and social relationships. At all periods, frequent pain significantly reduced psychological well-being, and seizures were associated with lower QoL in the social relationships domain. In both domains, we identified a group of individuals with CP who presented a reverse trajectory compared with the general QoL trajectory.Conclusion: Identification of QoL trajectories and their associated factors yields improved knowledge about the experience of individuals with CP until young adulthood. Further studies are needed to better understand the determinants that have the greatest influence on the different shapes of long-term trajectories of QoL.
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| 5. |
- Bergqvist, Lena, 1958, et al.
(författare)
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Evidence of Construct Validity for the Modified Mental Fatigue Scale When Used in Persons with Cerebral Palsy
- 2020
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Ingår i: Developmental Neurorehabilitation. - : Informa UK Limited. - 1751-8423 .- 1751-8431. ; 23:4
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Tidskriftsartikel (refereegranskat)abstract
- Introduction: Fatigue impacts negatively on everyday activities in individuals with cerebral palsy (CP). More knowledge is needed about how mental fatigue is manifested in this target group. The purpose of this study was to gather evidence about the validity of the modified Mental Fatigue Scale (m-MFS) in adults with CP. Methods: Mixed sequential exploratory design. The respondents were ten persons aged 22-56 with CP (MACS I-II). Results: The respondents perceived the m-MFS as easy to read and understand. Its structure was characterised as straightforward and the text of the rating options was deemed to assist identification with life situations. Very good agreement was seen between the respondents' and the instrument designers' intended meaning for the items in the m-MFS; the weighted kappa was 0.92. Conclusion: This study showed evidence of construct validity, based on response processes and content, for use of the modified MFS in adults with CP.
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| 6. |
- Eek, Meta Nyström, et al.
(författare)
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Objective measurement of sitting-Application in children with cerebral palsy
- 2022
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Ingår i: Gait & Posture. - : Elsevier BV. - 0966-6362. ; 96, s. 210-215
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Tidskriftsartikel (refereegranskat)abstract
- Background: Children with cerebral palsy (CP) and a severe motor impairment, have limited ability to perform volitional movements due to spasticity, involuntary postures and movements and reduced ability to maintain antigravity head and trunk control. A stable sitting position is a prerequisite for participation in daily life, but there is a lack of objective measurement methods for this population. Research question: Is it feasible to measure a stable sitting position with pressure mapping and 2D motion analysis, and can it detect differences to a) a reference group, b) between subgroups of CP and c) before and after treatment with intrathecal baclofen (ITB)? Methods: Pressure mapping, and a 2D motion analysis system, were used to capture movements of centre of pressure (CoP), and movements of head, hand and leg, sitting on a bench for 90 s. Twenty-two children with dyskinetic or bilateral spastic CP, GMFCS III-V, mean age 9.0, and 30 children with typical development (TD) mean age 10.7, were recruited between 2010 and 2019. Seventeen children were treated with ITB. Parents were interviewed regarding aspect of sitting. Non-parametric methods were used for statistical analysis. Results: Differences in CoP and kinematics were detected with more movements in children with CP compared to children with TD (p < 0.001). There were more movements in children with dyskinetic CP compared to children with bilateral spastic CP as captured with the pressure mapping system (CoP distance p = .005 and AnterioPosterior sway p = .014). After treatment with ITB, involuntary movements had decreased (CoP p = 0.006-0.035, kinematics p = 0.002-0.020). Parents reported improvement in sitting. The two measurement systems showed consistent results (rho 0.500-0.771, p = < 0.001-0.049). Significance: It was feasible to objectively measure sitting position in children with a moderate-to-severe motor impairment with differences to a reference group and after an intervention. CoP and head movements were the variables that were easiest to capture.
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| 7. |
- Fehlings, Darcy, et al.
(författare)
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Pharmacological and neurosurgical management of cerebral palsy and dystonia: Clinical practice guideline update
- 2024
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Ingår i: DEVELOPMENTAL MEDICINE AND CHILD NEUROLOGY. - 0012-1622 .- 1469-8749.
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Tidskriftsartikel (refereegranskat)abstract
- Dystonia, typically characterized by slow repetitive involuntary movements, stiff abnormal postures, and hypertonia, is common among individuals with cerebral palsy (CP). Dystonia can interfere with activities and have considerable impact on motor function, pain/comfort, and ease of caregiving. Although pharmacological and neurosurgical approaches are used clinically in individuals with CP and dystonia that is causing interference, evidence to support these options is limited. This clinical practice guideline update comprises 10 evidence-based recommendations on the use of pharmacological and neurosurgical interventions for individuals with CP and dystonia causing interference, developed by an international expert panel following the Grading of Recommendations, Assessment, Development and Evaluations (GRADE) approach. The recommendations are intended to help inform clinicians in their use of these management options for individuals with CP and dystonia, and to guide a shared decision-making process in selecting a management approach that is aligned with the individual's and the family's values and preferences. This clinical practice guideline provides evidence-based clinical recommendations for the use of pharmacological and neurosurgical management options for individuals with dystonia and cerebral palsy (CP), alongside practical considerations and suggestions for future research priorities. It was developed by a panel of clinicians with diverse expertise following the GRADE process, with constructive input from individuals with CP and dystonia and their families.image
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| 8. |
- Goldsmith, Shona, et al.
(författare)
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Cerebral palsy registers around the world: A survey
- 2024
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Ingår i: Developmental Medicine and Child Neurology. - 0012-1622 .- 1469-8749. ; 66:6, s. 765-777
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Tidskriftsartikel (refereegranskat)abstract
- Aim: To provide a description of cerebral palsy (CP) registers globally, identify which aim to report on CP epidemiology, and report similarities and differences across topics of importance for the sustainability and collaboration between registers. Method: Representatives of all known CP registers globally (n = 57) were invited to participate. The online survey included 68 questions across aims, methodologies, output/impact, and stakeholder involvement. Responses were analysed using descriptive statistics. Results: Forty-five registers participated, including three register networks. Twenty were newly established or under development, including 12 in low- and middle-income countries (LMICs). An epidemiological aim was reported by 91% of registers. Funding is received by 85% of registers, most often from not-for-profit organizations. CP definitions are comparable across registers. While the minimum data set of a register network is used by most registers, only 25% of identified items are collected by all three register networks. Ninety per cent of registers measure research activities/output, and 64% measure research impact. People with lived experience are involved in 62% of registers. Interpretation: There has been a recent surge in CP registers globally, particularly in LMICs, which will improve understanding of CP epidemiology. Ongoing efforts to address identified methodological differences are essential to validate comparison of results and support register collaboration.
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| 9. |
- Goldsmith, S., et al.
(författare)
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Congenital anomalies in children with postneonatally acquired cerebral palsy: an international data linkage study
- 2021
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Ingår i: Developmental Medicine and Child Neurology. - : Wiley. - 0012-1622 .- 1469-8749. ; 63:4, s. 421-428
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Tidskriftsartikel (refereegranskat)abstract
- AIM To describe the major congenital anomalies present in children with postneonatally acquired cerebral palsy (CP), and to compare clinical outcomes and cause of postneonatally acquired CP between children with and without anomalies. METHOD Data were linked between total population CP and congenital anomaly registers in five European and three Australian regions for children born 1991 to 2009 (n=468 children with postneonatally acquired CP; 255 males, 213 females). Data were pooled and children classified into mutually exclusive categories based on type of congenital anomaly. The proportion of children with congenital anomalies was calculated. Clinical outcomes and cause of postneonatally acquired CP were compared between children with and without anomalies. RESULTS Major congenital anomalies were reported in 25.6% (95% confidence interval [CI] 21.7-29.9) of children with postneonatally acquired CP. Cardiac anomalies, often severe, were common and present in 14.5% of children with postneonatally acquired CP. Clinical outcomes were not more severe in children with congenital anomalies than those without anomalies. Cause of postneonatally acquired CP differed with the presence of congenital anomalies, with cerebrovascular accidents predominating in the anomaly group. Congenital anomalies were likely associated with cause of postneonatally acquired CP in 77% of children with anomalies. INTERPRETATION In this large, international study of children with postneonatally acquired CP, congenital anomalies (particularly cardiac anomalies) were common. Future research should determine specific causal pathways to postneonatally acquired CP that include congenital anomalies to identify opportunities for prevention.
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| 10. |
- Goldsmith, S., et al.
(författare)
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Congenital anomalies in children with pre- or perinatally acquired cerebral palsy: an international data linkage study
- 2021
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Ingår i: Developmental Medicine and Child Neurology. - : Wiley. - 0012-1622 .- 1469-8749. ; 63:4, s. 413-420
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Tidskriftsartikel (refereegranskat)abstract
- Aim To describe the frequency and types of major congenital anomalies present in children with pre- or perinatally acquired cerebral palsy (CP), and compare clinical outcomes for children with and without anomalies. Method This multi-centre total population collaborative study between Surveillance of Cerebral Palsy in Europe, Australian Cerebral Palsy Register, and European Surveillance of Congenital Anomalies (EUROCAT) involved six European and three Australian regions. Data were linked between each region's CP and congenital anomaly register for children born between 1991 and 2009, and then pooled. Children were classified into mutually exclusive categories based on type of anomaly. Proportions of children with congenital anomalies were calculated, and clinical outcomes compared between children with and without anomalies. Results Of 8201 children with CP, 22.8% (95% confidence interval [CI] 21.9, 23.8) had a major congenital anomaly. Isolated cerebral anomalies were most common (45.2%), with a further 8.6% having both cerebral and non-cerebral anomalies. Cardiac anomalies only were described in 10.5% of children and anomalies associated with syndromes were also reported: genetic (8.0%), chromosomal (5.7%), and teratogenic (3.0%). Clinical outcomes were more severe for children with CP and congenital anomalies, particularly cerebral anomalies. Interpretation This large, international study reports major congenital anomalies in nearly one-quarter of children with pre- or perinatally acquired CP. Future research must focus on aetiological pathways to CP that include specific patterns of congenital anomalies.
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| 11. |
- Guyard, Audrey, et al.
(författare)
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Differences in participation between young adults with cerebral palsy and their peers: A cross-sectional multicentre European study
- 2024
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Ingår i: Disability and Health Journal. - 1936-6574 .- 1876-7583. ; 17:2
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Tidskriftsartikel (refereegranskat)abstract
- Background: Children and adolescents with disabilities are known to participate less in most areas of life than their non-disabled peers. Objectives: (1) To estimate differences in participation between young adults with cerebral palsy (CP) and their non-disabled peers; (2) to test the mediating role of financial difficulties and student status; (3) to test the moderating role of personal factors on participation difference; and (4) to test the moderating role of impairment. Methods: A cross-sectional study was conducted in young adults [19–28 years] with CP (n = 228) and non-disabled peers (n = 2861) in France, Germany and Sweden. Participation was assessed using the Questionnaire of Young People's Participation adapted for young adults (QYPP-YA). Differences in five domains of participation were estimated using structural equation modeling with WLSMV method and bias-corrected bootstrap confidence intervals. Results: Young adults with CP showed lower participation than others in all domains, with the largest difference in the “intimate relationships” domain (β = 1.71 bcCI95[1.46; 1.95]). Student status mediated the difference in "intimate relationships", “interpersonal relationships” and "independence". Women showed greater differences than men on "independence". Impairments moderated difference in participation. The less severely impaired young adults showed no difference with their non-CP peers in "interpersonal relationships", “social life” and "independence", but made autonomous everyday decisions more often than their peers. Conclusions: Young adults with CP do not have the same opportunities to attain the participation level of non-CP people of the same age. Continuance of education could help to reduce participation difference in "interpersonal relationships” and "independence”.
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| 12. |
- Himmelmann, Kate, 1959, et al.
(författare)
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Access to Intrathecal Baclofen Treatment for Children with Cerebral Palsy in European Countries: An SCPE Survey Reveals Important Differences.
- 2020
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Ingår i: Neuropediatrics. - : Georg Thieme Verlag KG. - 1439-1899 .- 0174-304X. ; 51:2, s. 129-134
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Tidskriftsartikel (refereegranskat)abstract
- The aim is to study access to intrathecal baclofen (ITB) for children with cerebral palsy (CP) in Europe, as an indicator of access to advanced care.Surveys were sent to CP registers, clinical networks, and pump manufacturers. Enquiries were made about ITB treatment in children born in 1990 to 2005 by sex, CP type, level of gross motor function classification system (GMFCS) and age at the start of treatment. Access to ITB was related to the country's gross domestic product (GDP) and % GDP spent on health.In 2011 population-based data from Sweden, Norway, England, Portugal, Slovenia, and Denmark showed that 114 (3.4%) of 3,398 children with CP were treated with ITB, varying from 0.4 to 4.7% between centers. The majority of the children were at GMFCS levels IV-V and had bilateral spastic CP. In Sweden, dyskinetic CP was the most commonly treated subtype. Boys were more often treated with ITB than girls (p=0.014). ITB was reported to be available for children with CP in 25 of 43 countries. Access to ITB was associated with a higher GDP and %GDP spent on health (p<0.01). Updated information from 2019 showed remaining differences between countries in ITB treatment and sex difference in treated children was maintained.There is a significant difference in access to ITB for children with CP across Europe. More boys than girls are treated. Access to ITB for children with CP is associated with GDP and percent of GDP spent on health in the country.
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| 13. |
- Himmelmann, Kate, 1959, et al.
(författare)
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Neuroimaging Patterns and Function in Cerebral Palsy-Application of an MRI Classification
- 2021
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Ingår i: Frontiers in Neurology. - : Frontiers Media SA. - 1664-2295. ; 11
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Tidskriftsartikel (refereegranskat)abstract
- Background: Cerebral palsy (CP) is a disorder of movement and posture and every child with CP has a unique composition of neurological symptoms, motor severity, and associated impairments, constituting the functional profile. Although not part of the CP definition, magnetic resonance imaging (MRI) sheds light on the localization, nature, and severity of brain compromise. The MRI classification system (MRICS), developed by the Surveillance of Cerebral Palsy in Europe (SCPE), describes typical MRI patterns associated with specific timing of vulnerability in different areas of the brain. The classification has proven to be reliable and easy to use. Aims: The aim of this study is to apply the MRICS on a large dataset and describe the functional profile associated with the different MRI patterns of the MRICS. Materials and Methods: Data on children with CP born in 1999-2009 with a post-neonatal MRI from 20 European registers in the JRC-SCPE Central Registry was included. The CP classification and the MRICS was applied, and The Gross Motor Function Classification (GMFCS) and the Bimanual Fine Motor Function (BFMF) classification were used. The following associated impairments were documented: intellectual impairment, active epilepsy, visual impairment, and hearing impairment. An impairment index was used to characterize severity of impairment load. Results: The study included 3,818 children with post-neonatal MRI. Distribution of CP type, motor, and associated impairments differed by neuroimaging patterns. Functional profiles associated with neuroimaging patterns were described, and the impairment index showed that bilateral findings were associated with a more severe outcome both regarding motor impairment and associated impairments than unilateral compromise. The results from this study, particularly the differences in functional severity regarding uni- and bilateral brain compromise, may support counseling and service planning of support of children with CP.
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| 14. |
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| 15. |
- Himmelmann, Kate, 1959, et al.
(författare)
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The panorama of cerebral palsy in Sweden part XIII shows declining prevalence in birth-years 2011-2014
- 2022
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Ingår i: Acta Paediatrica. - : Wiley. - 0803-5253 .- 1651-2227. ; 112:1, s. 124-131
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Tidskriftsartikel (refereegranskat)abstract
- Aim: To describe epidemiology and characteristics of cerebral palsy (CP) in western Sweden 1954-2014. Methods: Population-based study covering 105 935 live births in the area in 2011-2014. Birth characteristics, neuroimaging findings and outcome were analysed and prevalence calculated. Non-parametric methods were used for group comparisons. Results: CP was diagnosed in 192 children. Crude prevalence had decreased to 1.81 per 1000 live births (p = 0.0067). Gestational age-specific prevalence for <28 gestational weeks was 74.8 per 1000 live births, 46.6 for 28-31 weeks, 5.8 for 32-36 weeks and 1.1 per 1000 for >36 weeks of gestation. Hemiplegia, found in 36.2%, had declined (p = 0.03). Diplegia was found in 36.2% and tetraplegia 5.3%. Dyskinetic CP accounted for 18.6% and ataxia for 3.7%. Neuroimaging revealed maldevelopments in 14%, white matter lesions in 44%, cortical/subcortical lesions in 13% and basal ganglia lesions in 17%. Prenatal aetiology was considered in 34%, peri- or neonatal in 48%, while in 18% aetiological period remained unclassified. Motor outcome in children who needed neonatal care had improved (p = 0.04). Motor function in dyskinetic CP had improved compared to previous cohorts (p = 0.008). Conclusion: The prevalence of CP has declined, mainly in term-born and in hemiplegia, and motor severity has changed compared to previous cohorts.
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| 16. |
- Horber, Veronka, et al.
(författare)
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Prevalence, Clinical Features, Neuroimaging, and Genetic Findings in Children With Ataxic Cerebral Palsy in Europe
- 2023
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Ingår i: Neurology. - 0028-3878 .- 1526-632X. ; 101:24
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Tidskriftsartikel (refereegranskat)abstract
- Background and ObjectivesTo report on prevalence, associated impairments, severity, and neuroimaging findings in children with ataxic cerebral palsy (CP).MethodsIn children coded as having ataxic CP in the Central database of Joint Research Center-Surveillance of Cerebral Palsy in Europe (JRC-SCPE) and born during 1980-2010, birth characteristics, severity profiles including associated impairments, neuroimaging patterns, and the presence of syndromes were analyzed. Definitions were according to validated SCPE guidelines. Prevalence over time was estimated using Poisson regression.ResultsIn total, 679 children with ataxic CP were identified in 20 European CP registers. The proportion with ataxic CP was 3.8% and varied from 0% to 12.9%. Prevalence over time showed no significant trend. Approximately 70% of children with ataxic CP were able to walk, and 40% had severe intellectual impairment and a high impairment index. Children with ataxic CP were mostly born at term (79%) and with normal birth weight (77%). Neuroimaging patterns revealed normal findings in 29%, brain maldevelopments in 28.5%, miscellaneous findings in 23.5%, and brain injuries in 19%, according to the SCPE classification. Genetic syndromes were described in 9%.DiscussionThis register-based multicenter study on children with ataxic CP provides a large sample size for the analysis of prevalence, severity, and origin of this rare CP subtype. Even with strict inclusion and classification criteria, there is variation between registers on how to deal with this subtype, and diagnosis of ataxic CP remains a challenge. Ataxic cerebral palsy differs from other CP subtypes: children with ataxic CP have a disability profile that is more pronounced in terms of cognitive than gross motor dysfunction. They are mostly term born and the origin rarely suggests acquired injuries. In addition to neuroimaging, a comprehensive genetic workup is particularly recommended for children with this CP type.
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| 17. |
- Horber, V., et al.
(författare)
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The Origin of the Cerebral Palsies: Contribution of Population-Based Neuroimaging Data
- 2020
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Ingår i: Neuropediatrics. - : Georg Thieme Verlag KG. - 0174-304X .- 1439-1899. ; 51:2, s. 113-119
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Tidskriftsartikel (refereegranskat)abstract
- Background Surveillance of cerebral palsy in Europe (SCPE) presents the first population-based results on neuroimaging findings in children with cerebral palsy (CP) using a magnetic resonance imaging classification system (MRICS). Method MRIs of children with CP born between 1999 and 2009 from 18 European countries were analyzed. MRICS identifies patterns of brain pathology according to timing during brain development which was analyzed with respect to CP subtypes and gestational age. Results MRIs or written reports from 3,818 children were available. The main clinical characteristics were similar to the 5,415 without such data. Most frequent was predominant white matter injury (49%), followed by predominant gray matter injury (21%). Maldevelopments were found in 11% of cases. Miscellaneous findings were present in 8.5% and normal findings in 10.6%. MRI patterns of children with unilateral spastic, bilateral spastic, and dyskinetic CP were mainly lesional (77, 71, and 59%, respectively), whereas children with ataxic CP had more maldevelopments, miscellaneous, and normal findings (25, 21, and 32%, respectively). In children born preterm, predominant white matter injury was most prevalent (80% in children born <32 weeks of gestation). Conclusion Analysis of MRI in the European CP database identified CP as a mainly lesional condition on a large population basis, maldevelopments were relatively uncommon. An exception was ataxic CP. Children born preterm mostly presented with a lesion typical for their gestational age (GA) at birth. The decreasing prevalence of CP in this group suggests that progress in perinatal and neonatal medicine may lead to a reduction of these lesions.
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| 18. |
- Horber, V., et al.
(författare)
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The Role of Neuroimaging and Genetic Analysis in the Diagnosis of Children With Cerebral Palsy
- 2021
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Ingår i: Frontiers in Neurology. - : Frontiers Media SA. - 1664-2295. ; 11
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Tidskriftsartikel (refereegranskat)abstract
- Cerebral magnetic resonance imaging (MRI) is considered an important tool in the assessment of a child with cerebral palsy (CP), as it is abnormal in more than 80% of children with CP, disclosing the pathogenic pattern responsible for the neurological condition. MRI, therefore, is recommended as the first diagnostic step after medical history taking and neurological examination. With the advances in genetic diagnostics, the genetic contribution to CP is increasingly discussed, and the question arises about the role of genetic testing in the diagnosis of cerebral palsy. The paper gives an overview on genetic findings reported in CP, which are discussed with respect to the underlying brain pathology according to neuroimaging findings. Surveillance of Cerebral Palsy in Europe (SCPE) classifies neuroimaging findings in CP into five categories, which help to stratify decisions concerning genetic testing. Predominant white and gray matter injuries are by far predominant (accounting for around 50 and 20% of the findings). They are considered to be acquired. Here, predisposing genetic factors may play a role to increase vulnerability (and should especially be considered, when family history is positive and/or causative external factors are missing). In maldevelopments and normal findings (around 11% each), monogenic causes are more likely, and thus, genetic testing is clearly recommended. In the miscellaneous category, the precise nature of the MRI finding has to be considered as it could indicate a genetic origin.
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| 19. |
- Jonsson, Ulrica, et al.
(författare)
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Changes in walking ability, intellectual disability, and epilepsy in adults with cerebral palsy over 50 years: a population-based follow-up study.
- 2021
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Ingår i: Developmental Medicine & Child Neurology. - : Wiley. - 0012-1622 .- 1469-8749. ; 63:7, s. 839-845
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Tidskriftsartikel (refereegranskat)abstract
- To determine if walking ability and presence of intellectual disability and epilepsy change from childhood to 50years of age in individuals with cerebral palsy (CP), and if such changes are related to age, sex, or CP subtype.This was a population-based follow-up study of 142 adults born from 1959 to 1978 (82 males, 60 females; mean age 48y 4mo, range 37-58y; 44% unilateral, 35% bilateral, 17% dyskinetic, and 4% ataxic CP) listed in the CP register of western Sweden. We compared childhood data with a follow-up assessment in 2016.At follow-up, walking ability had changed significantly (p<0.001). The proportion of participants walking without aids had decreased from 71% to 62%, and wheelchair ambulation increased from 18% to 25%. Walking ability was related to subtype (p=0.001), but not to age, sex, pain, fatigue, or body mass index. The proportion classified as having intellectual disability had increased from 16% to 22% (p=0.039) and the proportion with epilepsy from 9% to 18% (p=0.015). Of those with childhood epilepsy, 46% were seizure-free without medication.Walking ability and the presence of intellectual disability and epilepsy had changed significantly since childhood. Life-long access to specialized health care is warranted for re-evaluation of impairments, treatment, and assistance.
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| 20. |
- Jonsson, Ulrica, et al.
(författare)
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Health Conditions in Adults With Cerebral Palsy: The Association With CP Subtype and Severity of Impairments
- 2021
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Ingår i: Frontiers in Neurology. - : Frontiers Media SA. - 1664-2295. ; 12
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Tidskriftsartikel (refereegranskat)abstract
- Aim: To determine the prevalence of common health conditions in adults with cerebral palsy (CP) and to identify associations with the CP subtype or the severity of impairments. Methods: A population-based, cross-sectional study of 153 adults with CP born from 1959 to 1978 (87 males, 66 females; median age 48 years 3 months, range 37–58 years; 41% with unilateral spastic, 36% bilateral spastic, 19% dyskinetic, and 4% with ataxic CP). Data was gathered through interviews, physical assessments, and medical record reviews. Results: The most common health conditions in adults with CP were pain 65%, upper gastrointestinal disorders 33%, dysphagia 29%, epilepsy 29%, and depression 27%. Cerebral palsy subtype was significantly associated with the presence of pain (p = 0.029), gastrointestinal (p < 0.001), and respiratory disorders (p = 0.006). A more severe physical impairment was associated with a higher prevalence of gastrointestinal disorders (p < 0.001), respiratory disorders (p < 0.001), and pressure ulcers (p < 0.001). Intellectual disability was associated with a higher prevalence of gastrointestinal disorders (p < 0.001), pneumonia (p = 0.001) epilepsy (p = 0.001), and pressure ulcers (p < 0.001), but with a lower prevalence of pain (p < 0.004) and hypertension (p = 0.043). Conclusion: The prevalence of several common health conditions is related to the CP subtype and severity of impairments, indicating that CP plays a role in the development of these health conditions. Follow-up of adults with CP needs to include not only impairments, but general health as well. Increased attention directed toward signs of gastrointestinal and respiratory disorders in individuals with either dyskinetic CP, gross motor function classification system (GMFCS) levels IV–V, or intellectual disability, is recommended.
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| 21. |
- Karlsson, P., et al.
(författare)
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Stakeholder consensus for decision making in eye-gaze control technology for children, adolescents and adults with cerebral palsy service provision: findings from a Delphi study
- 2021
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Ingår i: BMC Neurology. - : Springer Science and Business Media LLC. - 1471-2377. ; 21:1
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundLimited research exists to guide clinical decisions about trialling, selecting, implementing and evaluating eye-gaze control technology. This paper reports on the outcomes of a Delphi study that was conducted to build international stakeholder consensus to inform decision making about trialling and implementing eye-gaze control technology with people with cerebral palsy.MethodsA three-round online Delphi survey was conducted. In Round 1, 126 stakeholders responded to questions identified through an international stakeholder Advisory Panel and systematic reviews. In Round 2, 63 respondents rated the importance of 200 statements generated by in Round 1. In Round 3, 41 respondents rated the importance of the 105 highest ranked statements retained from Round 2.ResultsStakeholders achieved consensus on 94 of the original 200 statements. These statements related to person factors, support networks, the environment, and technical aspects to consider during assessment, trial, implementation and follow-up. Findings reinforced the importance of an individualised approach and that information gathered from the user, their support network and professionals are central when measuring outcomes. Information required to support an application for funding was obtained.ConclusionThis Delphi study has identified issues which are unique to eye-gaze control technology and will enhance its implementation with people with cerebral palsy.
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| 22. |
- Kim, Young-Min, et al.
(författare)
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SIGnature Libraries: A roadmap for the formation of special interest group libraries.
- 2023
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Ingår i: Annals of the Child Neurology Society. - : Wiley. - 2831-3267. ; 1:3, s. 218-227
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Tidskriftsartikel (refereegranskat)abstract
- "SIGnature Libraries" channel the dynamism of academic society-based special interest groups (SIG) to systematically identify and provide user-oriented access to essential literature for a subspecialty field in a manner that keeps pace with the field's continuing evolution. The libraries include literature beyond clinical trial data to encompass historical context, diagnostic conceptualization, and community organization materials to foster a holistic understanding of how neurologic conditions affect individuals, their community, and their lived experience.Utilizing a modified-Delphi approach, Child Neurology Society's Cerebral Palsy (CP) SIG (n = 75) administered two rounds of literature submissions and ratings. A final review by an 11-member international advisory group determined threshold ratings for resource inclusion and the library's final structure.Seventy-nine articles were submitted for the first Delphi round and 22 articles for the second Delphi round. Survey response rates among SIG members were 29/75 for the first round and 24/75 for the second round. The advisory board added additional articles in the final review process in view of the overall project goal. A total of 60 articles were included in the final library, and articles were divided into seven sections and stratified by rating scores. A process for ongoing revisions of the library was determined. The library will be published on the Child Neurology Society website and made publicly accessible.The CP SIGnature Library offers learners an unprecedented resource that provides equitable access to latest consensus guidelines, existing seminal datasets, up-to-date review articles, and other patient care tools. A distinctive feature of the library is its intentional large scope and depth, presented in a stratified fashion relative to the consensus-determined importance of each article. Learners can efficiently navigate the library based on individual interests and goals, and the library can be used as core curriculum for CP education.
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| 23. |
- Lidman, Git, et al.
(författare)
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Long-term effects of repeated botulinum neurotoxin A, bimanual training, and splinting in young children with cerebral palsy
- 2020
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Ingår i: Developmental Medicine and Child Neurology. - : Wiley. - 0012-1622 .- 1469-8749. ; 62:2, s. 252-258
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Tidskriftsartikel (refereegranskat)abstract
- Aim: To investigate long-term development of hand function after repeated botulinum neurotoxin A (BoNT-A) and occupational therapy at a young age. Method: Twenty children with unilateral spastic cerebral palsy (CP) (14 males, six females; median inclusion age 3y 1mo, range 1y 11mo–4y 3mo) participated in this longitudinal study. Ten children received occupational therapy after a randomized controlled trial and 10 repeated BoNT-A plus occupational therapy during 1-year. The Assisting Hand Assessment (AHA) and active supination, assessed the following 3years. The assessments were compared with data from a reference group to investigate development over time. Results: The improvement in AHA (7.5 AHA units) after BoNT-A plus occupational therapy was maintained at final follow-up. The occupational therapy group, unchanged after 1-year, improved by 5 AHA units (96% confidence interval [CI] 2–10), thus there was no difference between the groups. Median active supination increased in comparison with the reference group. In the BoNT-A/occupational therapy group, 9 out of 10 (97.85% CI 45 115) children improved in active supination. In the occupational therapy group, 7 out of 10 (97.85% CI –2 to68) children improved in active supination. No correlation between active supination and AHA was found. Interpretation: Bimanual performance achieved after BoNT-A plus occupational therapy was maintained, while it increased by follow-up in the occupational therapy group, suggesting that combined intervention gave earlier access to bimanual skills. Active supination was unrelated to AHA. © 2019 Mac Keith Press
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| 24. |
- Lidman, Git, et al.
(författare)
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Managing to learn bimanual activities - experiences from children and adolescents with cerebral palsy - a qualitative analysis
- 2022
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Ingår i: Disability and Rehabilitation. - : Informa UK Limited. - 0963-8288 .- 1464-5165. ; 44:3, s. 395-403
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Tidskriftsartikel (refereegranskat)abstract
- Purpose:Children and adolescents with cerebral palsy often have impaired hand function. This makes it difficult for them to deal with everyday activities. The aim of the study was to explore the experiences of children and adolescents with unilateral spastic cerebral palsy when it comes to learning and dealing with activities requiring bimanual use. Method:Ten participants, attending mainstream schools, with unilateral spastic cerebral palsy (10-18 years, MACS-level I-III) took part in semi-structured interviews. Qualitative analysis with verbatim transcripts were analysed using a Grounded Theory approach. Results:The learning of bimanual activities was described as a process taking place in interaction with the dynamics of everyday situations. Five categories describing the participants experiences emerged: "Reaching a point where you want to learn", "Awareness and acceptance of your own abilities", "Dealing with the boundaries of the disability", "Dealing with the impact of people around you" and "Strategies for learning". A multi-dimensional theory was derived, summarising how the participants learned bimanual activities in daily life. Conclusions:Children and adolescents with unilateral spastic cerebral palsy express that the process of learning bimanual activities can only take place when it fits in with life as it unfolds. Thus, they have to adapt to a changing context and their own developing skills.
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| 25. |
- Martinsson, C., et al.
(författare)
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Abducted Standing in Children With Cerebral Palsy: Effects on Hip Development After 7 Years
- 2021
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Ingår i: Pediatric Physical Therapy. - : Ovid Technologies (Wolters Kluwer Health). - 0898-5669. ; 33:2, s. 101-107
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: The effects of abducted standing on hip migration percentage (MP) and range of hip and knee motion in children with cerebral palsy were studied for more than 7 years in 2 case-control groups. One group had adductor-psoas tenotomy and the other did not. Methods: Case participants performed 15 degrees to 30 degrees of abduction per hip. Controls performed 0 degrees to 10 degrees of abduction and were matched on age, surgery, and follow-up time. Results: Median MP decreased 7.0% in the participants without surgery, increased 6.5% in their matched participant, and decreased 3.5% in the participants who had adductor-psoas tenotomy. Migration percentage decreased 18% in participants who after surgery performed abducted standing. Range of motion was greater after surgery in participants who performed standing abduction. Conclusions: Standing abduction at 15 degrees to 30 degrees for 10 h/wk reduces MP and preserves range of motion for up to 7 years. This is a new contribution to research for children with cerebral palsy.
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| 26. |
- McIntyre, S., et al.
(författare)
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Global prevalence of cerebral palsy: A systematic analysis
- 2022
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Ingår i: Developmental Medicine and Child Neurology. - : Wiley. - 0012-1622 .- 1469-8749. ; 64:12, s. 1494-1506
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Tidskriftsartikel (refereegranskat)abstract
- Aim To determine trends and current estimates in regional and global prevalence of cerebral palsy (CP). Method A systematic analysis of data from participating CP registers/surveillance systems and population-based prevalence studies (from birth year 1995) was performed. Quality and risk of bias were assessed for both data sources. Analyses were conducted for pre-/perinatal, postnatal, neonatal, and overall CP. For each region, trends were statistically classified as increasing, decreasing, heterogeneous, or no change, and most recent prevalence estimates with 95% confidence intervals (CI) were calculated. Meta-analyses were conducted to determine current birth prevalence estimates (from birth year 2010). Results Forty-one regions from 27 countries across five continents were represented. Pre-/perinatal birth prevalence declined significantly across Europe and Australia (11 out of 14 regions), with no change in postneonatal CP. From the limited but increasing data available from regions in low- and middle-income countries (LMICs), birth prevalence for pre-/perinatal CP was as high as 3.4 per 1000 (95% CI 3.0-3.9) live births. Following meta-analyses, birth prevalence for pre-/perinatal CP in regions from high-income countries (HICs) was 1.5 per 1000 (95% CI 1.4-1.6) live births, and 1.6 per 1000 (95% CI 1.5-1.7) live births when postneonatal CP was included. Interpretation The birth prevalence estimate of CP in HICs declined to 1.6 per 1000 live births. Data available from LMICs indicated markedly higher birth prevalence.
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| 27. |
- Muehlan, Holger, et al.
(författare)
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Satisfaction with health care services in young people with cerebral palsy in the transition period: results from a European multicenter study
- 2024
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Ingår i: FRONTIERS IN MEDICINE. - 2296-858X. ; 11
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Tidskriftsartikel (refereegranskat)abstract
- Background Young people with chronic health conditions and disabilities rely on the healthcare system to maintain their best possible health. The appropriate delivery and utilization of healthcare services are key to improve their autonomy, self-efficacy and employment outcomes. The research question of our study is directed toward investigating if poor availability and accessibility of healthcare services in general, as identified by unmet needs in healthcare, are associated with dissatisfaction with healthcare.Methods Within a European multicenter observational study, 357 young adults with cerebral palsy aged 19-28 were included. We assessed special healthcare needs, utilization of healthcare services, and satisfaction with healthcare applying the short-form of the YHC-SUN-SF, environmental and social variables (EAEQ) as well as indicators for severity of condition and functionality (e.g., GMFCS) of these participants based on a self-, assisted self- or proxy-reports. We used correlation analyses to explore associations between satisfaction with healthcare and respective indicators related to availability and accessibility of healthcare services as well as severity of the condition. In addition, we included reference values for satisfaction with heath care from young adults with various chronic conditions assessed within population-based surveys from some of the European countries included in the study.Results We identified several unmet healthcare needs, especially for widely used and established services (e.g., physical therapy). Satisfaction with healthcare (YHC-SUN-SF general and subscale scores) was moderate to high and almost consistently better for the sample of young adults with cerebral palsy as compared to reference values for young adults with various chronic conditions assessed within general population surveys). Correlation coefficients between satisfaction with healthcare and utilization of services and (unmet) healthcare needs were low, also with different indicators for severity of the condition or functionality.Conclusion Young adults with cerebral palsy reports of unmet healthcare needs varied largely but showed substantial deficits in some aspects. This seems to have no impact on the satisfaction with healthcare those patients currently receive. We conclude that these are two different constructs and somewhat independent indicators to evaluate the quality of healthcare. Clinicians and other practitioners should consider this distinction when monitoring patient needs in their daily practice.
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| 28. |
- Ohrvall, A. M., et al.
(författare)
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Intervention with the CO-OP Approach leads to a transfer effect over time to untrained goals for children with cerebral palsy or spina bifida
- 2023
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Ingår i: Disability and Rehabilitation. - 0963-8288 .- 1464-5165.
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Tidskriftsartikel (refereegranskat)abstract
- PurposeThis study aims to investigate whether the treatment effects, in terms of goal attainment, transfer effects and impact on executive functions, of an intervention in children with cerebral palsy or spina bifida using the Cognitive Orientation to daily Occupational Performance (CO-OP) Approach are maintained over time, from immediately after the intervention to three months afterwards.MethodA three-month follow-up study, from an intervention using CO-OP. Thirty-four children (7-16 years) each identified four goals (one untrained to examine transfer) and participated in an eleven-session intervention. Assessments were performed at baseline, immediately after the intervention and at a three-month follow-up using the Canadian Occupational Performance Measure and the Performance Quality Rating Scale. Executive function and self-rated competence were assessed at the same timepoints.ResultsStatistically significant and clinically relevant improvements in goal achievement were demonstrated for both trained and untrained goals after the intervention and were maintained at follow-up. The clinically relevant improvement in untrained goals continued to increase until follow-up. Self-rated competence increased after the intervention and was maintained at follow-up.ConclusionThe CO-OP intervention was effective in achieving and maintaining the children's own goals over time. The transfer effect was confirmed by higher goal attainment for the untrained goals.
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| 29. |
- Peny-Dahlstrand, Marie, 1953, et al.
(författare)
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Potential benefits of the cognitive orientation to daily occupational performance approach in young adults with spina bifida or cerebral palsy: a feasibility study
- 2020
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Ingår i: Disability and Rehabilitation. - : Informa UK Limited. - 0963-8288 .- 1464-5165. ; 42:2, s. 228-239
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Tidskriftsartikel (refereegranskat)abstract
- © 2018, © 2018 Informa UK Limited, trading as Taylor & Francis Group. Purpose: People with cerebral palsy (CP) or spina bifida (SB) often struggle to perform everyday-life activities. Both groups frequently also have difficulties in creating and using strategies effectively when performing tasks. The cognitive orientation to daily occupational performance (CO-OP) Approach combines the learning of cognitive strategies with task-specific approaches through a client-centred procedure. The aim of this study was to investigate whether the CO-OP Approach is feasible for and potentially beneficial to adolescents and young adults with CP or SB in Sweden by analysing four areas of feasibility (acceptability, efficacy, adaptation, and expansion). Methods: Exploratory multiple-case study using mixed methods. Ten persons aged 16–28, five with each condition, participated in an intervention period. Assessments were performed on three occasions: baseline, post-intervention, and six-month follow-up. Results: The result demonstrates that the CO-OP Approach has the potential to enable adolescents and young adults with either condition to achieve personal goals and to enhance their planning skills and their ability to use strategies when performing activities. This approach is also compatible with the core values of habilitation in Sweden and was found by the participants to be highly meaningful and useful. Conclusions: The CO-OP Approach is feasible for adolescents and young adults with SB or CP in Sweden.Implications for rehabilitation The Cognitive Orientation to daily Occupational Performance •is a feasible approach for adolescents and young adults with spina bifida and with cerebral palsy. •is a promising approach when it comes to enabling the achievement of personal goals. •might have potential to enhance executive functioning through strategy use. •is in line with the fundamental core values of disability rights of inclusion, empowerment, and participation.
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| 30. |
- Peny-Dahlstrand, Marie, 1953, et al.
(författare)
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The Cognitive Orientation to daily Occupational Performance (CO-OP) Approach is superior to ordinary treatment for achievement of goals and transfer effects in children with cerebral palsy and spina bifida - a randomized controlled trial
- 2023
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Ingår i: Disability and Rehabilitation. - : Informa UK Limited. - 0963-8288 .- 1464-5165. ; 45:5, s. 822-831
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Tidskriftsartikel (refereegranskat)abstract
- Purpose Children with cerebral palsy (CP) or spina bifida (SB) often have executive dysfunction affecting activity performance. With the Cognitive Orientation to daily Occupational Performance (CO-OP) Approach, children find their own way to perform activities, using problem-solving strategies and meta-cognitive thinking. The present study aimed to investigate the effectiveness of the CO-OP Approach in children with CP or SB, compared with conventional rehabilitation, in achieving self-identified activity goals, and to explore any generalization and transfer effects. Method Randomized controlled trial, CO-OP versus treatment as usual, 38 children (7-16 years) participated. Each child identified four goals (to study generalization and transfer, one remained untrained). Primary outcomes: Canadian Occupational Performance Measure (COPM) and Performance Quality Rating Scale (PQRS). Secondary outcomes assessed executive functions and self-rated everyday-life competence. Results Self-rated goal attainment (COPM) was significantly greater for both trained and untrained goals in the CO-OP group compared with the control group. The rating of observed performance (PQRS) was significantly higher for trained goals in the CO-OP group. The CO-OP group experienced fewer problems in everyday life after treatment. Executive functions did not differ significantly between groups. Conclusion CO-OP is more effective than ordinary treatment in achieving both trained and untrained goals.
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| 31. |
- Påhlman, Magnus, 1965, et al.
(författare)
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Autism and attention-deficit/hyperactivity disorder in children with cerebral palsy: high prevalence rates in a population-based study.
- 2021
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Ingår i: Developmental medicine and child neurology. - : Wiley. - 1469-8749 .- 0012-1622. ; 63:3, s. 320-327
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Tidskriftsartikel (refereegranskat)abstract
- To assess a total population of school-age children with cerebral palsy (CP) for autism and attention-deficit/hyperactivity disorder (ADHD) with a view to determining their prevalence and to relate findings to motor function, intellectual disability, and other associated impairments.Of 264 children, born between 1999 and 2006, from the CP register of western Sweden, 200 children (109 males, 91 females, median age at assessment 14y, range 7-18y) completed comprehensive screening and further neuropsychiatric clinical assessments.Ninety children (45%) were diagnosed with autism, ADHD, or both, 59 (30%) were diagnosed with autism, and 60 (30%) were diagnosed with ADHD. Intellectual disability was present in 51%. Two-thirds had autism, ADHD, and/or intellectual disability. In regression models, autism was mainly predicted by intellectual disability (odds ratio [OR]=4.1) and ADHD (OR=3.2), and ADHD was predicted by intellectual disability (OR=2.3) and autism (OR=3.0). Autism was more common in children born preterm (OR=2.0). Gross motor function was not associated with autism. ADHD prevalence was low in children with severe motor impairment, possibly due to diagnostic limitations.Autism and ADHD were common in this population of children with CP and were mainlyindependent of motor severity and CP type. The strongest predictor of autism/ADHD was intellectual disability. Assessment for autism and ADHD is warranted as part of the evaluation in CP.
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| 32. |
- Påhlman, Magnus, 1965, et al.
(författare)
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Autism spectrum disorder and attention-deficit/hyperactivity disorder in children with cerebral palsy: results from screening in a population-based group.
- 2020
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Ingår i: European Child and Adolescent Psychiatry. - : Springer Science and Business Media LLC. - 1018-8827 .- 1435-165X. ; 29, s. 1569-1579
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Tidskriftsartikel (refereegranskat)abstract
- Autism spectrum disorder (ASD) and attention-deficit/hyperactivity disorder (ADHD) are more common in children with cerebral palsy (CP) than in the general population, but may still be underdiagnosed. This study aimed to estimate screen-positive ASD and ADHD in a population-based group of 264 school-aged children with CP born 1999–2006 from the CP register of western Sweden. Validated parent-completed questionnaires were used at a median age of 12 years 11 months (range 8–17 years). Three different scales were used to detect signs of ASD and ADHD, respectively. Response rate was 88% (232/264). In 19 children, all in the most disabled group, the screening procedure was not feasible due to too few questionnaire items completed, leaving 213 for analyses. One third (74/213) of the children screened positive for ASD and half of the children (106/213) for ADHD, which was about twice as often as ASD/ADHD diagnoses had been clinically identified. Children with intellectual disability, epilepsy and/or impaired speech ability more often screened positive for ASD as well as ADHD. Severe motor impairment was more frequently associated with screen-positive ASD, but not ADHD. Neither sex nor CP type was associated with screen-positive ASD/ADHD. In conclusion, school-aged children with CP very often screened positive for ASD and/or ADHD. The prevalence of ASD and ADHD is most likely underestimated in children with CP. These screening findings require further investigations.
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| 33. |
- Påhlman, Magnus, 1965, et al.
(författare)
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Neuroimaging findings in children with cerebral palsy with autism and/or attention-deficit/hyperactivity disorder: a population-based study
- 2022
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Ingår i: Developmental Medicine and Child Neurology. - : Wiley. - 0012-1622 .- 1469-8749. ; 64:1, s. 63-69
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Tidskriftsartikel (refereegranskat)abstract
- Aim To compare neuroimaging patterns according to the Magnetic Resonance Imaging Classification System (MRICS) in children with cerebral palsy (CP) with and without autism and/or attention-deficit/hyperactivity disorder (ADHD). Method This population-based study assessed 184 children (97 males, 87 females) with CP born from 1999 to 2006 from the CP register of western Sweden, who had completed comprehensive screening and clinical assessment for neuropsychiatric disorders and undergone neuroimaging. Results Autism (total prevalence 30%) and ADHD (31%) were common in all neuroimaging patterns, including normal. Autism and ADHD were not more prevalent in children with bilateral than unilateral lesions, contrary to other associated impairments. Children with predominant white matter injury, related to insults in the late second or early third trimester, had the highest prevalence of autism (40%). Children who had sustained a middle cerebral artery infarction had the highest prevalence of ADHD (62%). Interpretation Although autism and ADHD are common regardless of neuroimaging patterns, timing and localization of insult appear to be of importance for the occurrence of autism and ADHD in children with CP. Neuroimaging may be of prognostic value for these associated impairments. Further in-depth neuroimaging studies may lead to a better understanding of the association between CP and neuropsychiatric disorders.
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| 34. |
- Rufino, A. D., et al.
(författare)
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Characteristics and Challenges of Epilepsy in Children with Cerebral Palsy - A Population-Based Study
- 2023
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Ingår i: Journal of Clinical Medicine. - : MDPI AG. - 2077-0383. ; 12:1
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Tidskriftsartikel (refereegranskat)abstract
- The aim of this population-based study was to describe the prevalence and characteristics of epilepsy in children with cerebral palsy (CP), focusing on antiseizure medication (ASM) and seizure outcome. Findings were related to CP type, gross motor function and associated impairments. Data on all 140 children with CP born in 2003-2006 were taken from the CP register of Western Sweden. Medical records were reviewed at ages 9-12 and 13-16 years. In total 43% had a diagnosis of epilepsy. Epilepsy was more common in children with dyskinetic CP, who more often had a history of infantile spasms, continuous spike-and-wave during sleep and status epilepticus. Neonatal seizures, severe intellectual disability, severe motor disability and autism were associated with a higher risk of epilepsy. Many children were on polytherapy, and valproate was frequently used, even in girls. At age 13-16 years, 45% of the children with epilepsy were seizure free for at least one year. Onset after 2 years of age, female sex and white matter injury were associated with good seizure outcome. Despite the risk of relapse, reduction or discontinuation of ASM could be an option in selected cases. It is important to optimize ASM and to consider the possibility of epilepsy surgery.
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| 35. |
- Spangmose, Anne Lærke, et al.
(författare)
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Cerebral palsy in ART children has declined substantially over time: a Nordic study from the CoNARTaS group
- 2021
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Ingår i: Human reproduction (Oxford, England). - : Oxford University Press (OUP). - 1460-2350 .- 0268-1161. ; 36:8, s. 2358-2370
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Tidskriftsartikel (refereegranskat)abstract
- STUDY QUESTION: Are the decreasing multiple birth rates after ART associated with a simultaneous drop in the incidence of cerebral palsy (CP) in ART children over time? SUMMARY ANSWER: The relative odds of CP in ART children have declined in the Nordic countries over the past two decades concurrently with declining multiple birth rates. WHAT IS KNOWN ALREADY: In the Nordic countries, the rate of twin pregnancies after ART has decreased from 30% in the early 1990s to 4-13% in 2014, following the implementation of elective single embryo transfer (SET). Consequently, preterm birth rates have declined substantially in ART pregnancies. However, whether the risk of CP, a known consequence of preterm birth, has decreased correspondingly is still unknown. STUDY DESIGN, SIZE, DURATION: Retrospective register-based cohort study based on data on all singletons, twins, and higher-order multiples born in Denmark (birth year 1994-2010), Finland (1990-2010), and Sweden (1990-2014), corresponding to 111 844 ART children and 4 679 351 spontaneously conceived children. PARTICIPANTS/MATERIAL, SETTING, METHODS: Data were obtained from a large Nordic cohort of children born after ART and spontaneous conception initiated by the Committee of Nordic ART and Safety-CoNARTaS. The CoNARTaS cohort was established by cross-linking national register data using the unique personal identification number, allocated to every citizen in the Nordic countries. Data from the National Medical Birth Registers, where information on maternal, obstetric, and perinatal outcomes is recorded, were cross-linked to data from the National ART- and Patients Registers to obtain information on fertility treatments and CP diagnoses. Relative risks of CP for ART compared to spontaneous conception were estimated as odds ratios from multivariate logistic regression analyses across all birth years, as well as for the following birth year categories: 1990-1993, 1994-1998, 1999-2002, 2003-2006, 2007-2010, and 2011-2014. Analyses were made for all children and for singletons and twins, separately. MAIN RESULTS AND THE ROLE OF CHANCE: The main outcome measure was the relative odds of CP in different time periods for ART versus spontaneously conceived children. CP was diagnosed in 661 ART children and 16 478 spontaneously conceived children born between 1990 and 2014. In 1990-1993, the relative odds of CP were substantially higher in all ART children (adjusted odds ratio (aOR) 2.76 (95% CI 2.03-3.67)) compared with all spontaneously conceived children, while in 2011-2014, it was only moderately higher (aOR 1.39 (95% CI 1.01-1.87)). In singletons, the higher relative odds of CP in ART children diminished over time from 1990 to 1993 (aOR 2.02 (95% CI 1.22-3.14)) to 2003-2006 (aOR 1.18 (95% CI 0.91-1. 49)) and was not significantly increased for birth cohorts 2007-2010 and 2011-2014. For ART twins versus spontaneously conceived twins, the relative odds of CP was not statistically significantly increased throughout the study period. LIMITATIONS, REASONS FOR CAUTION: The main limitation of the study was a shorter follow-up time and younger age at first CP diagnosis for ART children compared with spontaneously conceived children. However, analyses ensuring a minimum of bias from differences in age at CP diagnosis and follow-up time confirmed the results, hence, we do not consider this to cause substantial bias. WIDER IMPLICATIONS OF THE FINDINGS: A SET policy in ART treatments has the potential to reduce the increased risk of cerebral palsy in the ART population due to lower rates of multiple deliveries. At a time with high survival rates of frozen/thawed embryos, this study provides a strong argument against the continued use of multiple embryo transfer in most ART settings. Larger cohort studies including also the number of gestational sacs in early pregnancy will be preferable to show an effect of vanishing twins on the risk of CP in the ART population. STUDY FUNDING/COMPETING INTEREST(S): The study was financed by grants from NordForsk (grant number 71450), Elsass Foundation (19-3-0444), the ALF-agreement (ALFGBG 70940), and The Research Fund of Rigshospitalet, Copenhagen University Hospital. There are no conflicts of interest to declare. TRIAL REGISTRATION NUMBER: ISRCTN11780826.
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- Wibeck, Ann Louise, et al.
(författare)
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Range of Motion Limitations in Middle-aged Adults With Cerebral Palsy
- 2023
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Ingår i: Archives of Rehabilitation Research and Clinical Translation. - 2590-1095. ; 5:4
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Tidskriftsartikel (refereegranskat)abstract
- Objective: To describe limitations in range of motion (ROM) in middle-aged adults with cerebral palsy (CP), and identify associations with CP subtype, gross motor function, sex and age. Design: Population-based cohort study. Setting: Local and regional referral centers. Participants: Inclusion criteria: diagnosis of CP, born 1959 to 1978 and living in the county of Västra Götaland, Sweden. In the population-based register of CP in Western Sweden, 417 subjects were identified and 139 volunteered to participate. Adults with CP, born elsewhere, who had moved into the area were invited through patient organizations and habilitation units, and eleven chose to participate. In total 150 participants, age 37-58 years (mean 48) 65 women (43%) (N=150). All CP subtypes and Gross Motor Function Classification (GMFCS) levels were represented. Interventions: Not applicable Main Outcome Measures: Passive ROM was measured in the upper and lower extremity and was classified into 4 levels (inspired by The Spinal Alignment and Range of Motion Measure and adapted from the values of the American Academy of Orthopedic Surgeons); good=1, vs mild=2, moderate=3 or severe=4 limitation. The results were summarized to obtain a total score of the participants' ROM limitations. Results: Moderate to severe limitations were present in 98 % of the participants. There was a correlation to GMFCS level in both the upper and lower extremity (P<.001), but no correlation with age. Upper extremity limitations were most common in dyskinetic CP, lower extremity limitations were most common in dyskinetic CP and bilateral spastic CP. Men had more limitations in the lower extremity (P=.001). The most common limitation in the lower extremity was hamstrings tightness (82%) and hip abduction (80%), and in the upper extremity, limited shoulder abduction (57%). Conclusions: Limited ROM is common in adults with CP, most pronounced in shoulders, hip joints and hamstrings muscles, with no differences related to age in this age-span.
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