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Background and Objectives: To report on prevalence, associated impairments, severity, and neuroimaging findings in children with ataxic cerebral palsy (CP)., Methods: In 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., Results: In 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%., Discussion: This 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.

Background: User satisfaction is a key indicator of healthcare quality., Objective: We aimed to identify factors associated with satisfaction with motor rehabilitation (MR) in children and adults with cerebral palsy at a national level, using determinants related to patient characteristics, healthcare organisation and practice features., Methods: This study was part of ESPaCe, a national survey aimed at documenting the views of individuals with cerebral palsy and their families regarding MR services via a questionnaire, developed by a multidisciplinary group. The ESPaCe questionnaire included the Client Satisfaction Questionnaire (CSQ-8), whose total score was the primary outcome of this study. Survey participation was promoted nation-wide. The questionnaire could be completed by the person with cerebral palsy or their main carer. Analysis included the description of determinants across CSQ-8 quartiles and generalised linear modelling of the CSQ-8 score., Results: From June 2016 to June 2017, 1010 eligible participants (354 children, 145 adolescents and 511 adults) responded to the questionnaire, and 750 completed the CSQ-8. Univariate analysis suggested that multiple factors affected satisfaction with MR. On multivariate sequential adjustment, the factors that decreased satisfaction (all P<0.001) were being an adolescent, Gross Motor Function Classification System levels IV/V, frequent pain, receiving physiotherapy in private practice and poor access to a physiotherapist with specific CP training. Factors that increased satisfaction (all P<0.001) were presence of an MR coordinator, exchanges between healthcare professionals, provision of information regarding MR organisation, and goal setting and effective pain management by the physiotherapist. Organisation and practice features improved the predictive ability of patient characteristics (R 2 =0.40)., Conclusion: This study suggests that measures to improve the quality of healthcare for individuals with cerebral palsy should focus on improving pain management by the physiotherapist, establishing a therapeutic alliance, and greater provision of CP-specific practice education for healthcare professionals., (Copyright © 2019 Elsevier Masson SAS. All rights reserved.)

Multiple births (twins or higher order multiples) are increasing in developed countries and may present higher risk for cerebral palsy (CP). However, few studies can reliably investigate trends over time because these outcomes are relatively rare., Objective: We pooled data from European CP registers to investigate CP birth prevalence and its trends among single and multiple births born between 1990 and 2008., Design: Population cohort study., Setting: 12 population-based registers from the Surveillance of Cerebral Palsy in Europe collaboration., Participants: 4 446 125 single and multiple live births, of whom 8416 (0.19%) had CP of prenatal or perinatal origin., Main Outcomes: CP diagnosis ascertained in childhood using harmonised methods; CP subtype; Motor impairment severity among CP cases., Results: The rate of multiple births increased from 1990. Multiples displayed higher risk for CP (RR=4.27, 95% CI 4.00 to 4.57). For singletons and multiples alike, risk for CP was higher among births of lower gestational age (GA) or birth weight (BW). However, CP birth prevalence declined significantly among very preterm (<32 weeks) and very low BW (<1500 g) multiples. Singletons and multiples with CP displayed similar severity of motor impairment., Conclusions: Between 1990 and 2008, CP birth prevalence decreased steadily among multiples with low GA or BW. Furthermore, multiples with CP display similar profiles of severe motor impairment compared with CP singletons. Improvements in management of preterm birth since the 1990s may also have been responsible for providing better prospects for multiples., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Aim: 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., Methods: 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., Results: 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., Conclusion: 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., Competing Interests: None., (Georg Thieme Verlag KG Stuttgart · New York.)

Aim: 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., Method: 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., Results: 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., Interpretation: 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., (© 2016 Mac Keith Press.)

Aim: Children with cerebral palsy (CP) often experience communication difficulties. We aimed to identify a classification system for communication of children with CP suitable for epidemiological surveillance., Method: Systems to classify the communication of children with CP were identified. The Communication Function Classification System (CFCS), Functional Communication Classification System (FCCS), and Viking Speech Scale (VSS) were chosen for further investigation and translated. They were administered to 155 children aged 4 to 13 years with CP (across all motor severity levels) from eight European countries. Children's parents/carers, speech therapists, and other health professionals applied the systems through direct observation. Other professionals applied them from case notes only. The systems were assessed for agreement, stability, ease, and feasibility of application., Results: Test-retest stability was moderate-to-high for VSS (k=0.66-0.88), CFCS (k=uncomputed-0.91), and FCCS (k=0.52-0.91). Overall interrater agreement was fair to very good for every classification system. VSS achieved the best agreement between parents/carers and speech therapists. VSS was considered the easiest instrument to apply., Interpretation: Because of its ease of use by a range of healthcare professionals, the VSS should be considered for CP registers which intend to survey speech intelligibility. For a wider assessment of communication, the CFCS or FCC should be considered., (© 2015 Mac Keith Press.)

Aim: To monitor the trends in prevalence of cerebral palsy (CP) by birthweight in Europe, 1980 to 2003., Method: Data were collated from 20 population-based registers contributing to the Surveillance of Cerebral Palsy in Europe database. Trend analyses were conducted in four birthweight groups: <1000g (extremely low birthweight [ELBW]); 1000 to 1499g (very low birthweight [VLBW]); 1500 to 2499g (moderately low birthweight [MLBW]); and >2499g (normal birthweight [NBW])., Results: The overall prevalence of CP decreased from 1.90 to 1.77 per 1000 live births, p<0.001, with a mean annual fall of 0.7% (95% confidence interval [CI] -0.3% to -1.0%). Prevalence in NBW children showed a non-significant trend from 1.17 to 0.89 per 1000 live births (p=0.22). Prevalence in MLBW children decreased from 8.5 to 6.2 per 1000 live births (p<0.001), but not linearly. Prevalence in VLBW children also declined from 70.9 to 35.9 per 1000 live births (p<0.001) with a mean annual fall of 3.4% (95% CI -2.4% to -4.3%). Prevalence in ELBW children remained stable, at a mean rate of 42.4 per 1000 live births., Interpretation: The decline in prevalence of CP in children of VLBW continues, and confirms that previously reported. For the first time, there is also a significant decline among those of MLBW, resulting in a significant overall decrease in the prevalence of CP., (© 2015 Mac Keith Press.)

Surveillance registers monitor the prevalence of cerebral palsy and the severity of resulting impairments across time and place. The motor disorders of cerebral palsy can affect children's speech production and limit their intelligibility. We describe the development of a scale to classify children's speech performance for use in cerebral palsy surveillance registers, and its reliability across raters and across time. Speech and language therapists, other healthcare professionals and parents classified the speech of 139 children with cerebral palsy (85 boys, 54 girls; mean age 6.03 years, SD 1.09) from observation and previous knowledge of the children. Another group of health professionals rated children's speech from information in their medical notes. With the exception of parents, raters reclassified children's speech at least four weeks after their initial classification. Raters were asked to rate how easy the scale was to use and how well the scale described the child's speech production using Likert scales. Inter-rater reliability was moderate to substantial (k>.58 for all comparisons). Test-retest reliability was substantial to almost perfect for all groups (k>.68). Over 74% of raters found the scale easy or very easy to use; 66% of parents and over 70% of health care professionals judged the scale to describe children's speech well or very well. We conclude that the Viking Speech Scale is a reliable tool to describe the speech performance of children with cerebral palsy, which can be applied through direct observation of children or through case note review., (Copyright © 2013 Elsevier Ltd. All rights reserved.)

The present paper aims to analyze trends over time in prevalence of cerebral palsy of post-neonatal origin, to investigate whether changes are similar according to severity and to describe the disability profile by etiology. Post-neonatal cases, birth years 1976 to 1998, were identified from the Surveillance of Cerebral Palsy in Europe collaboration (19 population-based registries). A recognized causal event occurring between 28 days and 24 months of age was considered to define the cases. Trends in prevalence were explored using graphical methods (Lowess and Cusum control chart) and modeled with negative binomial regressions. Over the study period, 404 cases were identified as post-neonatal cases (5.5% of the total). Mean prevalence rate was 1.20 per 10,000 live births (95% CI [1.08-1.31]). A significant downward trend was observed (p=0.001), with an accentuated decrease in the 1990 s. The prevalence of severe cases which account for around one third of the total also significantly decreased over time (p<0.001). In 46% of cases, an infectious aetiology was reported; the corresponding prevalence significantly decreased since 1989. No significant decrease was observed for the rate of cases due to a vascular episode or of traumatic origin. Our results emphasize the need of large population-based surveillance systems to reliably monitor trends in prevalence in rare subgroups of children like those with acquired cerebral palsy. The decrease of the overall prevalence as well as those of the most severe cases may be partly due to public health actions targeted to prevent such events., (Copyright © 2013 Elsevier Ltd. All rights reserved.)

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., (© The Authors. Developmental Medicine & Child Neurology © 2012 Mac Keith Press.)

Aim: To evaluate the interrater reliability of the inclusion in registries and classification of children with cerebral palsy (CP)., Method: Two studies were conducted. In study 1, 12 paediatricians from 11 countries viewed video sequences of 12 children with or without CP (nine males, three females; median age 6y; range 2-16). In study 2, 19 professionals from eight countries participated in an online exercise. They had to classify the same children but based on written vignettes. All participants had to evaluate whether the child had CP, the neurological subtype (Surveillance of Cerebral Palsy in Europe classification system), and gross motor function level (Gross Motor Function Classification System [GMFCS]). Kappa (κ) coefficients were calculated for categorical variables and intraclass correlation coefficients (ICCs) for ordinal data., Results: Reliability was excellent in assessing whether or not a child had CP in study 1 (κ=1.00) and substantial in study 2 (κ=0.73); 95% confidence interval [CI] 0.58-0.87). For the neurological subtype, overall κ between paediatricians was 0.85 (95% CI 0.68-0.98), with full agreement observed for eight children. In study 2, overall κ was 0.78 (95% CI 0.61-0.91) with full agreement seen for five children. For the GMFCS, the ICC was 0.88 (95% CI 0.78-0.95) in study 1 and 0.80 (95% CI 0.64-0.91) in study 2., Interpretation: Reliability was excellent for all characteristics classified by paediatricians viewing the videos and substantial for professionals reading vignettes., (© The Authors. Developmental Medicine & Child Neurology © 2012 Mac Keith Press.)

Aim: The aim of this study was to describe trends in prevalence, subtypes, and severity among children with cerebral palsy (CP) born moderately preterm (MPT; (gestational age 32-36 wks) or at moderately low birthweight (MLBW; 1500-2499 g) in Europe., Method: We conducted trend analyses of data from 903 children with CP born between 1980 and 1998 who were MPT (gestational age 32-36 wks), taken from 11 registers in the Surveillance of Cerebral Palsy in Europe database and from 1835 children with CP who were born at moderately low birthweight (1500-2499 g), taken from 14 registers in the Surveillance of Cerebral Palsy in Europe database., Results: The overall annual prevalence of CP in children born MPT varied between 12.2 (95% confidence interval [CI] 8.5-17.1) per 1000 live births in 1983 and 4.5 (95% CI 3.2-6.3) per 1000 in 1997. There was a significant decrease in the prevalence over time adjusted for register, with an annual change in prevalence of -3% (95% CI -5 to -2%). This was due to a decrease in the prevalence of bilateral spastic CP (annual change -5%; 95% CI -7 to -3%)., Interpretation: There was a trend towards a decrease in the prevalence of CP among children born MPT, but no difference in prevalence among children born at MLBW. Both results may represent an improvement in perinatal and neonatal care., (© The Authors. Developmental Medicine & Child Neurology © 2011 Mac Keith Press.)

Time trends for cerebral palsy (CP) prevalence in children born > or =2,500 g vary across studies and scarce data exist on trends by subtype of CP. The objective of this study was to describe changes in prevalence of CP in infants born > or =2,500 g between 1980 and 1998 in Europe. Data were collated from the SCPE (Surveillance of Cerebral Palsy in Europe collaboration) common database. Poisson regression was used to test for change in prevalence over time. Birth year and register effects were explored and trends in prevalence were estimated by CP subtype and severity. Four thousand and two children with CP and birthweight > or =2,500 g were recorded in 15 population based-registers. The overall prevalence of CP was 1.16 per 1,000 live births (99% CI, 0.88-1.48) in 1980 and 0.99 (CI, 0.80-1.20) in 1998. The trend was not significant (P = .14), except in two registers. However, there were significant changes in the prevalence of spastic CP subtypes, with a decrease in the bilateral spastic form (P < .001), and an increase in the unilateral spastic form (P = .004). There was a concurrent reduction in neonatal mortality of children with birthweight > or =2,500 g: from 1.7 (CI, 1.4-2.1) to 0.9 (CI, 0.7-1.1) per 1,000 live births. In conclusion, for children born with birthweight > or =2,500 g, the prevalence of CP in Europe was stable in spite of changes by subtype and a significant decrease in neonatal mortality.

Introduction/Background User satisfaction is a key indicator of health-care quality. The aim of this study was to identify factors that influence satisfaction with motor rehabilitation (MR) in children and adults with cerebral palsy (CP). Material and method This study was part of a national survey coordinated by Fondation Paralysie Cérébrale/La Fondation Motrice aimed at documenting the views of persons with CP and their families on the provision of MR in France. A steering committee, that included persons with CP, representatives of patient and family organisations, professional and scientific societies, developed a questionnaire that included the 8-item Client Satisfaction Questionnaire (CSQ-8), which was the study primary outcome. The questionnaire was disseminated nationally and locally through advocacy groups, health care professional and social networks. It was answered by the person with CP or by the main carer, online or on paper then mailed. Results From June 2016 to June 2017, 1010 participants with validated entry criteria filled in a questionnaire (354 children, 145 youth and 511 adults) and 750 (75%) completed the CSQ-8. As for gross motor function, 12% reported GMFCS level I, 21% GMFCS II, 19% GMFCS III, 23% GMFCS IV, 25% GMFCS V. Univariate analysis showed that CSQ-8 was significantly related to (1) person with CP characteristics (age, GMFCS, MACS, associated deficiencies, occurrence of pain); (2) health care provision (organisation of physiotherapy sessions, continuity and coordination of health care); and (3) other environmental factors (regional, difficult access to available physiotherapists or to clinicians with specific training in CP). Multivariate analysis confirmed a large impact of age and GMFCS on CSQ-8. Conclusion Key determinants of satisfaction with MR in CP were identified. Exploring changes in MR organisation and coordination, pain management and health care providers CP training may lead to improved motor rehabilitation care quality for persons with cerebral palsy. [ABSTRACT FROM AUTHOR]

Introduction/Background Cerebral palsy (CP) describes a group of permanent disorders of the development of movement and posture, causing activity limitation, attributed to non-progressive disturbances that occurred in the development of fetal or infant brain. Motor rehabilitation (MR) constitutes a base to the management of people with CP. In the absence of French reference guidelines, advocacy groups have reported difficulties with access to convenient and quality physiotherapy services. The aim of this study was to identify perceived unmet needs and expectations about motor habilitation/rehabilitation of children, adolescents and adults with cerebral palsy. Material and method A collaborative survey was designed and led by advocacy groups with the support of scientific societies in France. Persons with cerebral palsy or their families, reached through local and national associations and professional networks, compiled a web-based or mail-in questionnaire (June/2016–June/2017) and 1010 responses were collated on 354 children, 145 adolescents and 511 adults, (46% females). Results Fifty-two percent were ambulant (GMFCS I–III) and 91% had physiotherapy at time of completing the questionnaire. The most highly perceived unmet needs were to improve communication between professionals for appropriate follow-up (79%), to feel free to ask questions (78%), and to be involved in the decision-making process regarding therapies (61%). The most important reported difficulties were to find a physiotherapist trained in CP (51%) or available (39%), and to integrate physiotherapy sessions in the personal/family schedule (34%). The most frequent expectations were about physiotherapist training (79%), information on health care and recommended exercises (75%), and access to rehabilitation centres/physiotherapists (70%); 50% reported high to very high expectations regarding motor rehabilitation methods different from those currently received. Conclusion Persons with cerebral palsy and their families identified unmet needs and expectations regarding motor rehabilitation that should be taken-up by practitioners, health care managers and policy makers, and practice guidelines developers. [ABSTRACT FROM AUTHOR]