| 1. |
- Ahlin, Kristina, et al.
(author)
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Antecedents and neuroimaging patterns in cerebral palsy with epilepsy and cognitive impairment: a population-based study in children born at term
- 2017
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In: Acta Obstetricia et Gynecologica Scandinavica. - : Wiley. - 1600-0412 .- 0001-6349. ; 96:7, s. 828-836
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Journal article (peer-reviewed)abstract
- Introduction. Antecedents of accompanying impairments in cerebral palsy and their relation to neuroimaging patterns need to be explored. Material and methods. A population-based study of 309 children with cerebral palsy born at term between 1983 and 1994. Prepartum, intrapartum, and postpartum variables previously studied as antecedents of cerebral palsy type and motor severity were analyzed in children with cerebral palsy and cognitive impairment and/or epilepsy, and in children with cerebral palsy without these accompanying impairments. Neuroimaging patterns and their relation to identified antecedents were analyzed. Data were retrieved from the cerebral palsy register of western Sweden, and from obstetric and neonatal records. Results. Children with cerebral palsy and accompanying impairments more often had low birthweight (kg) (odds ratio 0.5, 95% confidence interval 0.3-0.8), brain maldevelopment known at birth (p = 0.007, odds ratio infinity) and neonatal infection (odds ratio 5.4, 95% confidence interval 1.04-28.4). Moreover, neuroimaging patterns of maldevelopment (odds ratio 7.2, 95% confidence interval 2.9-17.2), cortical/subcortical lesions (odds ratio 5.3, 95% confidence interval 2.3-12.2) and basal ganglia lesions (odds ratio 7.6, 95% confidence interval 1.4-41.3) were more common, wheras white matter injury was found significantly less often (odds ratio 0.2, 95% confidence interval 0.1-0.5). In most children with maldevelopment, the intrapartum and postpartum periods were uneventful (p
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| 2. |
- Ahlin, Kristina, et al.
(author)
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Antecedents of cerebral palsy according to severity of motor impairment.
- 2016
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In: Acta Obstetricia et Gynecologica Scandinavica. - : Wiley. - 1600-0412 .- 0001-6349. ; 95:7, s. 793-802
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Journal article (peer-reviewed)abstract
- The purpose of this study was to determine whether antecedents and neuroimaging patterns vary according to the severity of motor impairment in children with cerebral palsy. Material and methods. A population-based study in which all 309 term-born children with spastic and dyskinetic cerebral palsy born between 1983 and 1994 and 618 matched controls were studied. Antecedents were retrieved from obstetric records. Information on neuroimaging was retrieved from the cerebral palsy Register of Western Sweden. Cases were grouped by severity of motor impairment: mild (walks without aids), moderate (walks with aids) or severe (dependent on wheelchair). Binary logistic regression, the Cochran-Armitage test for trends, interaction analyses and interrelationship analyses were performed. Results. Antecedents associated with mild motor impairment were antepartum (placental weight, maternal weight and antibiotic therapy) or intrapartum and postpartum adverse events (meconium-stained amniotic fluid, low Apgar score, admission to neonatal intensive care unit and neonatal encephalopathy). Antecedents associated with severe motor impairment were antepartum (congenital infection, small head circumference and brain maldevelopment) or intrapartum and postpartum (emergency cesarean section and maternal antibiotic therapy). Comparisons between mild and severe motor impairment revealed congenital infection, maldevelopment, neonatal encephalopathy and meconium aspiration syndrome significantly more often in the group with severe motor impairment (p
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| 3. |
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| 4. |
- Ahlin, Kristina, et al.
(author)
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Non-infectious risk factors for different types of cerebral palsy in term-born babies: a population-based, case-control study.
- 2013
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In: BJOG : an international journal of obstetrics and gynaecology. - : Wiley. - 1471-0528 .- 1470-0328. ; 120:6, s. 724-731
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Journal article (peer-reviewed)abstract
- OBJECTIVE: To identify non-infectious antenatal and perinatal risk factors for cerebral palsy (CP) and its subtypes in children born at term. DESIGN: A population-based, case-control study. SETTING: The western healthcare region of Sweden. POPULATION: A population-based series of children with CP born at term during 1983-94 (n=309) was matched with a control group (n=618). METHODS: A total of 62 variables, maternal characteristics, and prepartal, intrapartal and postpartal variables were retrieved from obstetric records. Both univariate and multivariate analyses were performed for spastic and dyskinetic CP, and for the total CP group. MAIN OUTCOME MEASURES: Cerebral palsy (CP) and subtypes. RESULTS: Univariate analysis resulted in 26 significant risk factors for CP. Birthweight (OR0.54, 95%CI0.39-0.74), not living with the baby's father (OR2.58, 95%CI 1.11-5.97), admittance to a neonatal intensive care unit (NICU) (OR 4.43, 95% CI 3.03-6.47), maternal weight at 34weeks of gestation (OR1.02, 95%CI 1.00-1.03) and neonatal encephalopathy (OR69.2, 95%CI 9.36-511.89) were found to be risk factors for CP in the totalCP group in our multivariate analysis. Factors during the periods before, during and after delivery were all shown to increase the risk of spastic diplegia and tetraplegia, whereas mostly factors during the period before delivery increased the risk of spastic hemiplegia, and only factors during delivery increased the risk of dyskinetic CP. Admittance to an NICU was a risk factor for all CP subtypes. CONCLUSIONS: The risk factor pattern differed by CP subtype. The presented risk factors may be useful indicators for identifying children at risk of developing CP, and helpful for targeting individuals for early intervention programmes.
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| 5. |
- Alriksson-Schmidt, Ann, et al.
(author)
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Improving the Health of Individuals With Cerebral Palsy: Protocol for the Multidisciplinary Research Program MOVING ON WITH CP
- 2019
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In: Jmir Research Protocols. - Toronto, Canada : JMIR Publications Inc.. - 1929-0748. ; 8:10
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Journal article (peer-reviewed)abstract
- Background: Cerebral palsy (CP) is one of the most common early onset disabilities globally. The causative brain damage in CP is nonprogressive, yet secondary conditions develop and worsen over time. Individuals with CP in Sweden and most of the Nordic countries are systematically followed in the national registry and follow-up program entitled the Cerebral Palsy Follow-Up Program (CPUP). CPUP has improved certain aspects of health care for individuals with CP and strengthened collaboration among professionals. However, there are still issues to resolve regarding health care for this specific population. Objective: The overall objectives of the research program MOVING ON WITH CP are to (1) improve the health care processes and delivery models; (2) develop, implement, and evaluate real-life solutions for Swedish health care provision; and (3) evaluate existing health care and social insurance benefit programs and processes in the context of CP. Methods: MOVING ON WITH CP comprises 9 projects within 3 themes. Evaluation of Existing Health Care (Theme A) consists of registry studies where data from CPUP will be merged with national official health databases, complemented by survey and interview data. In Equality in Health Care and Social Insurance (Theme B), mixed methods studies and registry studies will be complemented with focus group interviews to inform the development of new processes to apply for benefits. In New Solutions and Processes in Health Care Provision (Theme C), an eHealth (electronic health) procedure will be developed and tested to facilitate access to specialized health care, and equipment that improves the assessment of movement activity in individuals with CP will be developed. Results: The individual projects are currently being planned and will begin shortly. Feedback from users has been integrated. Ethics board approvals have been obtained. Conclusions: In this 6-year multidisciplinary program, professionals from the fields of medicine, social sciences, health sciences, and engineering, in collaboration with individuals with CP and their families, will evaluate existing health care, create conditions for a more equal health care, and develop new technologies to improve the health care management of people with CP.
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| 6. |
- Arnaud, C., et al.
(author)
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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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In: BMC Neurology. - : Springer Science and Business Media LLC. - 1471-2377. ; 21:1
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Journal article (peer-reviewed)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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| 7. |
- Arnaud, C., et al.
(author)
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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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In: Paediatric and Perinatal Epidemiology. - : Wiley. - 0269-5022 .- 1365-3016. ; 37:5, s. 404-412
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Journal article (peer-reviewed)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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| 8. |
- Arnaud, C., et al.
(author)
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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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In: Frontiers in Neurology. - : Frontiers Media SA. - 1664-2295. ; 12
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Journal article (peer-reviewed)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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| 9. |
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| 10. |
- Bagazgoitia, N. V. D., et al.
(author)
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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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In: Frontiers in Neurology. - : Frontiers Media SA. - 1664-2295. ; 12
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Journal article (peer-reviewed)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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| 11. |
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| 12. |
- Bergqvist, Lena, 1958, et al.
(author)
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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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In: Developmental Neurorehabilitation. - : Informa UK Limited. - 1751-8423 .- 1751-8431. ; 23:4
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Journal article (peer-reviewed)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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| 13. |
- Bergqvist, Lena, 1958, et al.
(author)
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Experiences of occupational performance in young adults with cerebral palsy
- 2018
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In: World Federation of Occupational Therapists (WFOT) 2018, abstract No 1916.
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Conference paper (other academic/artistic)abstract
- The young adults with cerebral palsy (CP) consider that, despite life being so demanding, it is important to perform occupations themselves because "When I do, I become someone". Hence, it is necessary to advance intervention methods based on personally important occupations to enable individuals with CP to find their own way of occupational performance to promote health. Further research is needed to enhance individuals with CP to perform everyday occupations without too much struggle.
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| 14. |
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| 15. |
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| 16. |
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| 17. |
- Bergqvist, Lena, 1958, et al.
(author)
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When I do, I become someone: experiences of occupational performance in young adults with cerebral palsy
- 2019
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In: Disability and rehabilitation. - : Informa UK Limited. - 1464-5165 .- 0963-8288. ; 41:3
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Journal article (peer-reviewed)abstract
- Persons with cerebral palsy, even if they have relatively good motor functions, have a lower level of independence and participation in everyday activities than persons of the same age without disabilities. However, there are few descriptions of how persons with cerebral palsy themselves perceive their performance of activities in everyday life. The aim of this study was to describe the perceptions that young adults with cerebral palsy have of occupational performance in everyday life.This qualitative interview study includes 10 participants with cerebral palsy classified with Manual Ability Classification System level I-II, aged 19-30 years. The data were analyzed using a phenomenographic approach.The interviews resulted in five categories: "Important to do"; "Demanding but can be facilitated"; "Excludes or includes"; "Diminishes me or makes me grow"; and "Comes at a price".The young adults with cerebral palsy consider that, despite life being so demanding, it is extremely important to perform activities themselves and to feel included, as this enables personal growth. Hence, it is necessary to advance intervention methods based on personally important activities to enable individuals with cerebral palsy to find their own way to perform activities. Further research is needed to increase opportunities for individuals with cerebral palsy to perform everyday activities without too much fatigue and struggle. Implications for Rehabilitation For young adults with cerebral palsy it is extremely important to perform everyday activities independently; by DOING activities they form their identity. Intervention models aimed to enable persons with cerebral palsy to be involved and find their own way to perform everyday activities should be emphasized. Attention must be paid to how mental fatigue is manifested in persons with cerebral palsy. To build self-awareness and self-efficacy, individuals with cerebral palsy need information, early in life, about cerebral palsy and the multifaceted difficulties the disability might lead to.
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| 18. |
- Bergqvist, Lena, 1958, et al.
(author)
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When I do, I become someone: experiences of occupational performance in young adults with cerebral palsy
- 2017
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In: VGFOUSA-702441, ISTAR.
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Conference paper (other academic/artistic)abstract
- Introduction Performance of daily activities and participation are often influenced throughout life in individuals with cerebral palsy (CP), even when the person has fairly good motor functions, and executive dysfunctions may also have an impact on performance in this group. However, it has rarely been described how persons with CP themselves perceive their performance of daily activities. Aim The aim of this study was to describe the experiences that young adults with CP have of occupational performance in everyday life. Methods Qualitative interview study with ten participants with CP, MACS I-II, aged 19-30 years. The data were analysed using a phenomenographic approach. Results The interviews resulted in five categories of perceptions of occupational performance, i.e doing: “Important to do”; “Demanding but can be facilitated”; “Excludes or includes”; “Diminishes me or makes me grow”; and “Comes at a price”. Whether doing diminished the participants or made them grow depends on the outcome of doing. When performing is too demanding and/or makes the participants feel excluded, they felt diminished as human beings. Performance that is facilitated and/or provides a sense of inclusion promotes personal growth. The participants pay a high price in terms of physical deterioration, pain, stress, and fatigue in their efforts to become who they want to be through doing. Conclusions The young adults with CP consider that, despite life being so demanding, it is extremely important to perform daily activities themselves and to feel included, as this makes them grow as human beings. Person-centred intervention methods based on personally important activities should be tested in order to meet the persons’ wishes and needs in their efforts to grow through DOING. Further research is needed to develop evaluation methods of how mental fatigue manifests in individuals with CP. The multifaceted difficulties to which CP often leads should be communicated to the persons themselves to enhance their self-awareness and give them the opportunity to explain their capabilities to others.
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| 19. |
- Bergqvist, Lena, 1958, et al.
(author)
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When I do I become someone - young adults with cerebral palsy experiences of occupational performance and participation in daily life.
- 2016
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In: International Conference on Cerebral Palsy and other Childhood-onset Disabilities Stockholm 1–4 June 2016, Abstract book.
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Conference paper (peer-reviewed)abstract
- Background: Studies have shown that persons with cerebral palsy (CP), even if they have good hand function and are able to move independently, have a lower level of independence and participation in daily life than persons without disabilities in the same age. In the interaction between the person, environment and activity the perception of participation occurs. No studies can be found showing how young adults with CP perceive their ability to perform activities and its relation to their participation in everyday life. Aim: To investigate how young adults with CP perceive their ability of occupational performance and their participation in everyday life. Method: A qualitative interview study, with a Phenomenographic approach, with 10 persons with CP (MACS I-III) in the age of 18-30 years, in the region of Västra Götaland, Sweden. Result: Preliminary result show that young adults with CP perceive their occupational performance as very important in life, and that it is crucial to perform activities yourself and in the same way as others. The persons consider that occupational performance can affect selfesteem, self-image and self-confidence, and is viewed to help young adults to grow as person. Occupational performance is experienced to create feeling of affiliation or exclusion, depending on the possibility to be a part of an activity situation or how the people in the environment act. To perform activities describes as very demanding, especially cognitively, but with knowledge, compensation, adaptation, support and self-motivation it becomes possible. The persons describe that, even if it becomes possible, the occupational performance has a high price in form of motor impairment, pain, mental and physical fatigue, which can affect the possibility to continue performing activities. Conclusion: Young adults with CP consider that despite the fact that life is so demanding, it is important to perform activities yourself, because "When I do I become someone”.
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| 20. |
- Bergqvist, Lena, 1958, et al.
(author)
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When I do I become someone - young adults with cerebral palsy experiences of occupational performance and participation in daily life.
- 2016
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In: COTEC-ENOTHE Congress, Abstract book.
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Conference paper (peer-reviewed)abstract
- Background: Studies have shown that persons with cerebral palsy (CP), even if they have good hand function and move independently, have a lower level of independence and participation in daily life than persons without disabilities in the same age. The aim of the study was to investigate how young adults with CP perceive their ability of occupational performance and their participation in everyday life. Method: Qualitative interview study with 10 persons (18-30 years old) with CP (MACS I-III), in the western Sweden. Results: The young adults with CP perceived their occupational performance as very important. It is crucial for them to perform activities in the same way as others. To perform activities was described as very demanding, especially cognitively, but with knowledge, compensation, adaptation, support and self-motivation it became possible. Occupational performance was experienced to create feelings of affiliation or exclusion, depending on people’s conduct and the possibility to participate in activity situations. The persons considered that occupational performance can affect self-esteem, self-image and self-confidence, and is viewed to help them to grow as persons. Still it has high price in form of physical deterioration, pain, stress, mental and physical fatigue. Conclusion: Young adults with CP consider that despite the fact that life is so demanding, it is important to perform activities themselves, because "When I do I become someone”. Application to Practice: Knowledge from the study will provide conditions for interventions based on the understanding that persons with CP need balance in their daily life without giving up "doing".
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| 21. |
- Dahlseng, Magnus O, et al.
(author)
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Gastrostomy tube feeding of children with cerebral palsy: variation across six European countries.
- 2012
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In: Developmental Medicine and Child Neurology. - : Wiley. - 0012-1622. ; 54:10, s. 938-944
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Journal article (peer-reviewed)abstract
- Aim To compare the prevalence of gastrostomy tube feeding (GTF) of children with cerebral palsy (CP) in six European countries. Method Data on 1295 children (754 males, 541 females; mean age 5y 11mo, range 11y 2mo, min 6mo, max 11y 8mo) with CP born from 1999 to 2001 were collected from geographically defined areas in six European countries; four of the areas covered the whole country. Distribution of CP was unilateral 37%, bilateral 51%, dyskinetic 8%, and ataxic 4%. Sixty children were classified in Gross Motor Function Classification System (GMFCS) levels I and II, 6 in level III and 34 in levels IV and Vas Outcome measures were GTF, age at placement, feeding difficulties and the children's height and weight for age standard deviation scores (z-scores). Results The use of GTF among all children with CP was highest in western Sweden (22%, 95% confidence interval [CI] 16-29), and lowest in Portugal (6%, 95% CI 3-10), northern England (6%, 95% CI 3-9) and in Iceland (3%, 95% CI 0-13; p<0.001). The difference between areas was greater among children in GMFCS levels IV and V (non-ambulant); in this group, lower height z-scores were more prevalent in the areas with lower prevalence of GTF. The children's age at placement of gastrostomy also varied between areas (p<0.002). Interpretation The observed differences in the use of GTF may reflect differences in access to treatment or clinical practice, or both. Our results suggest that the use of GTF may improve growth in height and weight among children with more severely affected gross motor function - the group most likely to have associated feeding difficulties.
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| 22. |
- Delobel-Ayoub, Malika, et al.
(author)
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Prevalence and characteristics of autism spectrum disorders in children with cerebral palsy.
- 2017
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In: Developmental medicine and child neurology. - : Wiley. - 1469-8749 .- 0012-1622. ; 59:7, s. 738-742
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Journal article (peer-reviewed)abstract
- To evaluate the prevalence of co-occurring autism spectrum disorders (ASDs) among children with cerebral palsy (CP), and to describe their characteristics.The data of 1225 CP cases from four population-based registers (Iceland, Sweden, and two in France) and one population-based surveillance programme (North East England, UK) participating in the Surveillance of Cerebral Palsy in Europe Network (SCPE) were analysed. The ASD diagnoses were systematically recorded using category F84 of the International Classification of Diseases, 10th Revision. The registers provided data on children born between 1995 and 2006, while the cross-sectional survey in the UK concerned children aged 0 to 19 years, registered in 2010.Among the children with CP, 107 had an associated diagnosis of ASD - i.e., 8.7% of the study population (95% confidence interval 7.2-10.5). This proportion varied across centres from 4.0% to 16.7% but was independent of CP prevalence. Male sex, co-occurring epilepsy, intellectual disability, and better walking ability were associated with the coexistence of ASD.Our findings support the need for a multidisciplinary approach to management of children with CP to adequately identify and address all facets of presentation, including ASD.
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| 23. |
- Eek, Meta N, et al.
(author)
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Intrathecal baclofen in dyskinetic cerebral palsy: effects on function and activity.
- 2018
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In: Developmental medicine and child neurology. - : Wiley. - 1469-8749 .- 0012-1622. ; 60:1, s. 94-99
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Journal article (peer-reviewed)abstract
- To investigate the effect of intrathecal baclofen (ITB) on function and activity in dyskinetic cerebral palsy (CP).A retrospective cohort study of records from 25 children (15 males, 10 females; mean age 10y 11mo, SD 4y 9mo). Five were classified in Gross Motor Function Classification level IV and 20 in level V. Parents were interviewed about activities in daily life, sitting, communication, pain, sleep, and gross and fine motor function. Differences before and 1 year after ITB were graded as positive, no change, or negative. Assessments of dystonia (using the Barry-Albright Dystonia Scale) and muscle tone (Ashworth Scale) were made. Joint range of motion (ROM) was measured.Both dystonia and increased muscle tone, present in all participants before ITB, decreased after (p<0.001). Passive ROM was restricted, with no difference after. Parents reported improvements in activities in daily life (p<0.001), sitting (p<0.001), communication (p<0.001), and fine motor function (p=0.013), but no change in gross motor function. Before ITB, pain and disturbed sleep were reported. There was a reduction in pain (p=0.002) and sleep improved (p=0.004) after ITB.After ITB in individuals with dyskinetic CP, improvements were found in sitting, communication, and fine motor skills. There was a reduction in dystonia and muscle tone, and pain and sleep improved.Intrathecal baclofen can affect specific aspects of functioning in dyskinetic cerebral palsy. Sitting, communication, and fine motor function improved. Dystonia and spasticity were reduced. Pain was reduced and sleep improved.
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| 24. |
- Eek, Meta Nyström, et al.
(author)
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No Decrease in Muscle Strength after Botulinum Neurotoxin-A Injection in Children with Cerebral Palsy
- 2016
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In: Frontiers in Human Neuroscience. - : Frontiers Media SA. - 1662-5161. ; 10
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Journal article (peer-reviewed)abstract
- Spasticity and muscle weakness is common in children with cerebral palsy (CP). Spasticity can be treated with botulinum neurotoxin-A (BoNT-A), but this drug has also been reported to induce muscle weakness. Our purpose was to describe the effect on muscle strength in the lower extremities after BoNT-A injections in children with CP. A secondary aim was to relate the effect of BoNT-A to gait pattern and range of motion. Twenty children with spastic CP were included in the study, 8 girls and 12 boys (mean age 7.7 years). All were able to walk without support, but with increased muscle tone interfering with motor function and gait pattern. Sixteen children had unilateral spastic CP and four bilateral spastic CP. Twenty-four legs received injections with BoNT-A in the plantar flexor muscles. The children were tested before treatment, around 6 weeks after at the peak effect of BoNT-A, and at 6 months after treatment, with measurement of muscle strength, gait analysis, and range of motion. There were no differences in muscle strength in plantar flexors of treated legs at peak effect compared to baseline. Six months after treatment, there was still no change in untreated plantar flexor muscles, but an increasing trend in plantar flexor strength in legs treated with BoNT-A. Parents reported positive effects in all children, graded as: small in three children, moderate in eight, and large in nine children. The gait analysis showed a small improvement in knee extension at initial contact, and there was a small increase in passive range of motion for ankle dorsiflexion. Two children had a period with transient weakness and pain. We found that voluntary force production in plantar flexor muscles did not decrease after BoNT-A, instead there was a trend to increased muscle strength at follow-up. The increase may be explained as an effect of the blocking of involuntary nerve impulses, leading to an opportunity to using and training the muscles with voluntary control. Adequate muscle strength is important for maintaining the ability to walk and knowledge of how a treatment affects muscle strength is useful when selecting interventions.
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| 25. |
- Eek, Meta Nyström, et al.
(author)
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Objective measurement of sitting-Application in children with cerebral palsy
- 2022
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In: Gait & Posture. - : Elsevier BV. - 0966-6362. ; 96, s. 210-215
-
Journal article (peer-reviewed)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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| 26. |
- Elvrum, Ann-Kristin G, et al.
(author)
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Bimanual Capacity of Children With Cerebral Palsy: Intra- and Interrater Reliability of a Revised Edition of the Bimanual Fine Motor Function Classification.
- 2017
-
In: Physical & occupational therapy in pediatrics. - : Informa UK Limited. - 1541-3144 .- 0194-2638. ; 37:3, s. 239-251
-
Journal article (peer-reviewed)abstract
- To develop a revised edition of the Bimanual Fine Motor Function (BFMF 2), as a classification of fine motor capacity in children with cerebral palsy (CP), and establish intra- and interrater reliability of this edition.The content of the original BFMF was discussed by an expert panel, resulting in a revised edition comprising the original description of the classification levels, but in addition including figures with specific explanatory text. Four professionals classified fine motor function of 79 children (3-17years; 45 boys) who represented all subtypes of CP and Manual Ability Classification levels (I-V). Intra- and inter-rater reliability was assessed using overall intra-class correlation coefficient (ICC), and Cohen's quadratic weighted kappa.The overall ICC was 0.86. Cohen's weighted kappa indicated high intra-rater (кw: >0.90) and inter-rater (кw: >0.85) reliability.The revised BFMF 2 had high intra- and interrater reliability. The classification levels could be determined from short video recordings (<5 minutes), using the figures and precise descriptions of the fine motor function levels included in the BFMF 2. Thus, the BFMF 2 may be a feasible and useful classification of fine motor capacity both in research and in clinical practice.
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| 27. |
- Elvrum, Ann-Kristin G, et al.
(author)
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Bimanual Fine Motor Function (BFMF) Classification in Children with Cerebral Palsy: Aspects of Construct and Content Validity.
- 2016
-
In: Physical & occupational therapy in pediatrics. - : Informa UK Limited. - 1541-3144 .- 0194-2638. ; 36:1, s. 1-16
-
Journal article (peer-reviewed)abstract
- ABSTRACT The Bimanual Fine Motor Function (BFMF) is currently the principal classification of hand function recorded by the Surveillance of Cerebral Palsy in Europe (SCPE) register. The BFMF is used in a number of epidemiological studies, but has not yet been validated. Aims: To examine aspects of construct and content validity of the BFMF. Methods and Results: Construct validity of the BFMF was assessed by comparison with the Manual Ability Classification System (MACS) using register-based data from 539 children born 1999-2003 (304 boys; 4-12years). The high correlation with the MACS (Spearman's rho = 0.89, CI: 0.86-0.91, p<.001) supports construct validity of the BFMF. The content of the BFMF was appraised through literature review, and by using the ICF-CY as a framework to compare the BFMF and MACS. The items hold, grasp and manipulate were found to be relevant to describe increasingly advanced fine motor abilities in children with CP, but the description of the BFMF does not state whether it is a classification of fine motor capacity or performance. Conclusion: Our results suggest that the BFMF may provide complementary information to the MACS regarding fine motor function and actual use of the hands, particularly if used as a classification of fine motor capacity.
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| 28. |
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| 29. |
- Fehlings, Darcy, et al.
(author)
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Pharmacological and neurosurgical interventions for managing dystonia in cerebral palsy: a systematic review.
- 2018
-
In: Developmental medicine and child neurology. - : Wiley. - 1469-8749 .- 0012-1622. ; 60:4, s. 356-366
-
Journal article (peer-reviewed)abstract
- To systematically review evidence for pharmacological/neurosurgical interventions for managing dystonia in individuals with cerebral palsy (CP) to inform a care pathway.Searches included studies with a minimum of five participants with dystonia in CP receiving oral baclofen, benzodiazepines (clonazepam, diazepam, lorazepam), clonidine, gabapentin, levodopa, trihexyphenidyl, botulinum toxin, intrathecal baclofen (ITB), or deep brain stimulation (DBS). Evidence was classified according to American Academy of Neurology guidelines.Twenty-eight articles underwent data extraction: one levodopa, five trihexyphenidyl, three botulinum toxin, six ITB, and 13 DBS studies. No articles for oral baclofen, benzodiazepines, clonidine, or gabapentin met the inclusion criteria. Evidence for reducing dystonia was level C (possibly effective) for ITB and DBS; level C (possibly ineffective) for trihexyphenidyl; and level U (inadequate data) for botulinum toxin.For dystonia reduction, ITB and DBS are possibly effective, whereas trihexyphenidyl was possibly ineffective. There is insufficient evidence to support oral medications or botulinum toxin to reduce dystonia. There is insufficient evidence for pharmacological and neurosurgical interventions to improve motor function, decrease pain, and ease caregiving. The majority of the pharmacological and neurosurgical management of dystonia in CP is based on clinical expert opinion.Intrathecal baclofen and deep brain stimulation are possibly effective in reducing dystonia. Current evidence does not support effectiveness of oral medications or botulinum toxin to reduce dystonia. Evidence is inadequate for pharmacological/neurosurgical interventions impact on improving motor function, pain/comfort, and easing caregiving. The majority of the care pathway rests on expert opinion.
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| 30. |
- Fehlings, Darcy, et al.
(author)
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Pharmacological and neurosurgical management of cerebral palsy and dystonia: Clinical practice guideline update
- 2024
-
In: DEVELOPMENTAL MEDICINE AND CHILD NEUROLOGY. - 0012-1622 .- 1469-8749.
-
Journal article (peer-reviewed)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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| 31. |
- Fyrberg, Åsa, et al.
(author)
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Utredning och rehabilitering av förvärvad hjärnskada hos barn och ungdomar. Presentation av en klinisk utredningsmodell.
- 2018
-
In: Nationell konferens "Habilitering 2018", Göteborg, Sverige, september 2018..
-
Conference paper (other academic/artistic)abstract
- Bakgrund: Barn och ungdomar med förvärvad hjärnskada utgör en heterogen grupp. En majoritet av skadorna är orsakade av trafikolyckor men även unga som drabbats av infektioner i hjärnan, stroke, drunkningstillbud, fysiskt våld eller hjärntumör ingår i målgruppen. Kostnaderna för de första tre åren efter svåra traumatiska skador har beräknats till ca 2,25 miljoner kronor per person och år. Det har beskrivits att kostnadsläget skulle vara annorlunda om en kontinuerlig rehabilitering erbjöds subakut. Sedan 2011 finns en rutin i Västra Götalandsregionen för utredning och bedömning av barn och ungdomar med hjärntumör. Syftet är att kartlägga behovet av rehabilitering hos varje deltagare. För barn och unga i målgruppen med annan skadebakgrund än hjärntumör finns idag inte någon nationellt utarbetad modell för att säkra vårdkedjan efter hjärnskadorna. Möjligheterna till utredning och behandling är därmed oförutsägbar och kan resultera i en ojämlik vårdsituation där vissa patienter får insatser och andra inte. Syfte: Vi vill bidra till en utformning av nationella riktlinjer för alla barn och unga som tillhör målgruppen med förvärvade hjärnskador. 69 Metod: Därför presenterar vi en modell som används på Regionhabiliteringen vid Drottning Silvias barn- och ungdomssjukhus i Göteborg för utredning och påbörjad rehabilitering efter avslutad medicinsk behandling. Modellen beskriver även uppföljande insatser. Resultat och slutsats: Vi inbjuder till en workshop med intresserade deltagare på Habilitering 2018 för att presentera vår utredningsmodell, dela erfarenheter och få synpunkter på det fortsatta utvecklingsarbetet. Det övergripande syftet är att bidra till en värdeskapande habilitering ur ett livsperspektiv för barn och ungdomar med förvärvad hjärnskada. Kontaktperson - E-post: asa.fyrberg@vgregion.se
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| 32. |
- Gillberg, Christopher, 1950, et al.
(author)
-
Bengt Hagberg.
- 2015
-
In: Acta paediatrica (Oslo, Norway : 1992). - : Wiley. - 1651-2227 .- 0803-5253. ; 104:10
-
Journal article (other academic/artistic)
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| 33. |
- Goldsmith, Shona, et al.
(author)
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Cerebral palsy registers around the world: A survey
- 2024
-
In: Developmental Medicine and Child Neurology. - 0012-1622 .- 1469-8749. ; 66:6, s. 765-777
-
Journal article (peer-reviewed)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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| 34. |
- Goldsmith, S., et al.
(author)
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Congenital anomalies in children with postneonatally acquired cerebral palsy: an international data linkage study
- 2021
-
In: Developmental Medicine and Child Neurology. - : Wiley. - 0012-1622 .- 1469-8749. ; 63:4, s. 421-428
-
Journal article (peer-reviewed)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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| 35. |
- Goldsmith, S., et al.
(author)
-
Congenital anomalies in children with pre- or perinatally acquired cerebral palsy: an international data linkage study
- 2021
-
In: Developmental Medicine and Child Neurology. - : Wiley. - 0012-1622 .- 1469-8749. ; 63:4, s. 413-420
-
Journal article (peer-reviewed)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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| 36. |
- Guyard, Audrey, et al.
(author)
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Differences in participation between young adults with cerebral palsy and their peers: A cross-sectional multicentre European study
- 2024
-
In: Disability and Health Journal. - 1936-6574 .- 1876-7583. ; 17:2
-
Journal article (peer-reviewed)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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| 37. |
- Himmelmann, Kate, 1959, et al.
(author)
-
Access to Intrathecal Baclofen Treatment for Children with Cerebral Palsy in European Countries: An SCPE Survey Reveals Important Differences.
- 2020
-
In: Neuropediatrics. - : Georg Thieme Verlag KG. - 1439-1899 .- 0174-304X. ; 51:2, s. 129-134
-
Journal article (peer-reviewed)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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| 38. |
- Himmelmann, Kate, 1959, et al.
(author)
-
Bilateral spastic cerebral palsy--prevalence through four decades, motor function and growth
- 2007
-
In: Eur J Paediatr Neurol. - : Elsevier BV. - 1090-3798. ; 11:4, s. 215-22
-
Journal article (peer-reviewed)abstract
- The aim was to depict changes in the prevalence and severity of bilateral spastic cerebral palsy (CP) over a 40-year period. Another objective was to characterise the group born in 1991-1998 with respect to gross motor function, spasticity and growth. Data were obtained from the CP register of western Sweden and rehabilitation records. RESULTS: After a rise to 1.27 per 1000 live births in 1983-1986, the prevalence decreased significantly, in children born both preterm and at term, to 0.69 in 1995-1998. After 1975, more children were born preterm than at term. There was a significant decrease in severe bilateral spastic CP during the same period, mainly in children born at term. In all, 46% of the children born at term and 33% of those born preterm had a severe motor impairment, i.e. no walking ability. In the 167 children born in 1991-1998, the gross motor function classification system (GMFCS) level was I in 14%, II in 34%, III in 10%, IV in 25% and V in 17%. The GMFCS level correlated with the gross motor function measure (GMFM) and the Ashworth spasticity scores, as well as with the deviation in postnatal weight and height. We conclude that the prevalence of bilateral spastic CP has decreased since the mid-1980s, parallel to a reduction in the severity of the motor impairment. Children born preterm have predominated since the mid-1970s. The severity of the motor impairment correlated with the degree of spasticity, GMFM and growth. The percentage of children who were underweight was substantial.
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| 39. |
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| 40. |
- Himmelmann, Kate, 1959
(author)
-
Cerebral palsy - patterns and patchwork.
- 2011
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In: Developmental medicine and child neurology. - : Wiley. - 1469-8749 .- 0012-1622. ; 53:10
-
Journal article (peer-reviewed)
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| 41. |
- Himmelmann, Kate, 1959, et al.
(author)
-
Communication ability in cerebral palsy: A study from the CP register of western Sweden.
- 2013
-
In: European journal of paediatric neurology. - : Elsevier BV. - 1090-3798. ; 17:6, s. 568-574
-
Journal article (peer-reviewed)abstract
- BACKGROUND: Communication is often impaired in cerebral palsy (CP). Tools are needed to describe this complex function, in order to provide effective support. AIM: To study communication ability and the relationship between the Communication Function Classification System (CFCS) and CP subtype, gross motor function, manual ability, cognitive function and neuroimaging findings in the CP register of western Sweden. METHODS: Sixty-eight children (29 girls), 14 with unilateral spastic CP, 35 with bilateral spastic CP and 19 with dyskinetic CP, participated. The CFCS, Gross Motor Function Classification System (GMFCS) and Manual Ability Classification System (MACS) levels, cognitive impairment and neuroimaging findings were recorded. RESULTS: Half the children used speech, 32% used communication boards/books and 16% relied on body movements, eye gaze and sounds. Twenty-eight per cent were at the most functional CFCS level I, 13% at level II, 21% at level III, 10% at level IV and 28% at level V. CFCS levels I-II were found in 71% of children with unilateral spastic CP, 46% in bilateral spastic CP and 11% in dyskinetic CP (p=0.03). CFCS correlated with the GMFCS, MACS and cognitive function (p<0.01). Periventricular lesions were associated with speech and more functional CFCS levels, while cortical/subcortical and basal ganglia lesions were associated with the absence of speech and less functional CFCS levels (p<0.01). CONCLUSION: Communication function profiles in CP can be derived from the CFCS, which correlates to gross and fine motor and cognitive function. Good communication ability is associated with lesions acquired early, rather than late, in the third trimester.
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| 42. |
- Himmelmann, Kate, 1959, et al.
(author)
-
Dyskinetic cerebral palsy: a population-based study of children born between 1991 and 1998
- 2007
-
In: Dev Med Child Neurol. - 0012-1622. ; 49:4, s. 246-51
-
Journal article (peer-reviewed)abstract
- The aim of this study was to describe the epidemiology, aetiology, and clinical findings in dyskinetic cerebral palsy (CP)in a population-based follow-up study of children born between 1991 and 1998. Age range at ascertainment was 4 to 8 years and prevalence was 0.27 per 1000 live-births. Forty-eight children were examined (27 males, 21 females; mean age 9y, range 5-13y). Thirty-nine had dystonic CP and nine a choreo-athetotic subtype. Primitive reflexes were present in 43 children and spasticity in 33. Gross Motor Function Classification System levels were: Level IV, n= 10 and Level V, n= 28. The rate of learning disability (n= 35) and epilepsy (n= 30) increased with the severity of the motor disability. Thirty-eight children had anarthria. Peri- or neonatal adverse events had been present in 34 of 42 children born at >or=34 weeks' gestation. Motor impairment was most severe in this group. Placental abruption or uterine rupture had occurred in 8 participants and 19 of the 42 near-term/term children required assisted ventilation, compared with 1% and 12% respectively in other CP types. Neuroimaging in 39 children born at >or=34 weeks revealed isolated, late third trimester lesions in 24 and a combination of early and late third trimester lesions in seven. Dyskinetic CP is the dominant type of CP found in term-born, appropriate-for-gestational-age children with severe impairments who have frequently experienced adverse perinatal events.
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| 43. |
- Himmelmann, Kate, 1959, et al.
(author)
-
Function and neuroimaging in cerebral palsy: a population-based study.
- 2011
-
In: Developmental medicine and child neurology. - : Wiley. - 1469-8749 .- 0012-1622. ; 53:6, s. 516-21
-
Journal article (peer-reviewed)abstract
- Aim The aim of this population-based study was to describe function in cerebral palsy (CP) in relation to neuroimaging. Method Motor function, accompanying impairments, and neuroimaging (86 by magnetic resonance imaging, 74 by computed tomography) were studied in 186 children born in western Sweden between 1999 and 2002 (96 males, 90 females; age range at data collection 4-8y). Results Forty per cent of the children had unilateral spastic CP, 39% bilateral, 16% dyskinetic CP, and 5% ataxia. Fifty-one per cent were in level I of the Gross Motor Function Classification System (GMFCS), 14% in level II, 3% in level III, 11% in level IV, and 22% level V. Forty per cent of the children were in level I of the Manual Ability Classification System 19% were in II, 9% at III, 8% in IV, and 24% in level V. Seventy-six per cent of the children with white-matter lesions were in GMFCS levels I and II, whereas 67% with basal ganglia lesions were in levels IV and V. Learning disability* (45%), epilepsy (44%), and visual impairment (17%) were most common in children with brain maldevelopment, and cortical/subcortical or basal ganglia lesions. Speech was impaired in 49% of the children, absent in 30%, and 6% had a neuropsychiatric diagnosis. Compared with children born between 1991 and 1998, the numbers of those in GMFCS level I increased (p=0.007), as did those with epilepsy (p=0.015). Interpretation Neuroimaging improves the understanding of the neuroanatomical basis for function in CP. Type and severity of motor impairment and accompanying impairments are related to the timing of lesions.
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| 44. |
- Himmelmann, Kate, 1959, et al.
(author)
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Gross and fine motor function and accompanying impairments in cerebral palsy
- 2006
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In: Dev Med Child Neurol. - 0012-1622. ; 48:6, s. 417-23
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Journal article (peer-reviewed)abstract
- The aim of this study was to describe and analyze gross and fine motor function and accompanying neurological impairments in children with cerebral palsy (CP) born between 1991 and 1998 in western Sweden. A population-based study comprised 411 children with a diagnosis of CP ascertained at 4 to 8 years of age. Gross Motor Function Classification System (GMFCS) levels were documented in 367 children (205 males, 162 females). Bimanual Fine Motor Function (BFMF) classification levels of 345 of the children and information on learning disability, epilepsy, visual and hearing impairments, and hydrocephalus from 353 children were obtained. For spastic CP, a new classification according to the Surveillance of Cerebral Palsy in Europe of uni- and bilateral spastic CP was applied. GMFCS was distributed at Level I in 32%, Level II in 29%, Level III in 8%, Level IV in 15%, and Level V in 16%. The corresponding percentages for BFMF were 30.7%, 31.6%, 12.2%, 11.9%, and 13.6% respectively. Learning disability was present in 40%, epilepsy in 33%, and severe visual impairment in 19% of the children. Motor function differed between CP types. More severe GMFCS levels correlated with larger proportions of accompanying impairments and, in children born at term, to the presence of adverse peri/neonatal events in the form of intracranial haemorrhage/stroke, cerebral infection, and hypoxic-ischaemic encephalopathy. GMFCS Level I correlated positively to increasing gestational age. We conclude that the classification of CP should be based on CP type and motor function, as the two combine to produce an indicator of total impairment load.
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| 45. |
- Himmelmann, Kate, 1959
(author)
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Hands-on in cerebral palsy research.
- 2009
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In: Developmental medicine and child neurology. - : Wiley. - 1469-8749 .- 0012-1622. ; 51:7, s. 497-8
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Journal article (peer-reviewed)
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| 46. |
- Himmelmann, Kate, 1959, et al.
(author)
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MRI classification system (MRICS) for children with cerebral palsy: development, reliability, and recommendations.
- 2017
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In: Developmental medicine and child neurology. - : Wiley. - 1469-8749 .- 0012-1622. ; 59:1, s. 57-64
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Journal article (peer-reviewed)abstract
- To develop and evaluate a classification system for magnetic resonance imaging (MRI) findings of children with cerebral palsy (CP) that can be used in CP registers.The classification system was based on pathogenic patterns occurring in different periods of brain development. The MRI classification system (MRICS) consists of five main groups: maldevelopments, predominant white matter injury, predominant grey matter injury, miscellaneous, and normal findings. A detailed manual for the descriptions of these patterns was developed, including test cases (www.scpenetwork.eu/en/my-scpe/rtm/neuroimaging/cp-neuroimaging/). A literature review was performed and MRICS was compared with other classification systems. An exercise was carried out to check applicability and interrater reliability. Professionals working with children with CP or in CP registers were invited to participate in the exercise and chose to classify either 18 MRIs or MRI reports of children with CP.Classification systems in the literature were compatible with MRICS and harmonization possible. Interrater reliability was found to be good overall (k=0.69; 0.54-0.82) among the 41 participants and very good (k=0.81; 0.74-0.92) using the classification based on imaging reports.Surveillance of Cerebral Palsy in Europe (SCPE) proposes the MRICS as a reliable tool. Together with its manual it is simple to apply for CP registers.
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| 47. |
- Himmelmann, Kate, 1959, et al.
(author)
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Neuroimaging Patterns and Function in Cerebral Palsy-Application of an MRI Classification
- 2021
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In: Frontiers in Neurology. - : Frontiers Media SA. - 1664-2295. ; 11
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Journal article (peer-reviewed)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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| 48. |
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| 49. |
- Himmelmann, Kate, 1959, et al.
(author)
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Risk factors for cerebral palsy in children born at term.
- 2011
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In: Acta obstetricia et gynecologica Scandinavica. - : Wiley. - 1600-0412 .- 0001-6349.
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Journal article (peer-reviewed)abstract
- Objective. To provide an overview of current research on risk factors for cerebral palsy (CP) in children born at term and hypothesize how new findings can affect the content of the CP registers worldwide. Data Source. A systematic search in PubMed for original articles, published from 2000 to 2010 regarding risk factors for CP in children born at term was conducted. Methods of study selection. Factors from the prenatal, perinatal and neonatal period considered as possible contributors to the causal pathway to CP in children born at term were regarded as risk factors. Full text review was made of 266 articles. Results. Sixty-two articles met the criteria for an original report on risk factors for CP in children born at term. Perinatal adverse events including stroke were the focus of most publications, followed by genetic studies. Malformations, infections, perinatal adverse events and multiple gestation were risk factors associated with CP. The evidence regarding for example thrombophilic factors and non-CNS abnormalities was inconsistent. Conclusion. Information on maternal and neonatal infections, umbilical cord blood gases at birth, mode of delivery and placental status should be collected in a standardized way in CP registers. Information on social factors such as education level, family income and area of residence is also of importance. More research is needed to understand the risk factors of CP and specifically of how they relate to causal pathways of cerebral palsy.
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| 50. |
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