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Aim: To describe the birth prevalence, temporal trends, and clinical outcomes of twins, triplets, or quadruplets with cerebral palsy (CP). Method: This was a cross‐sectional study using data for twins, triplets, and quadruplets with prenatally or perinatally acquired CP and pooled from the Surveillance of Cerebral Palsy in Europe network (born 1992–2009) and Australian Cerebral Palsy Register (born 1993–2009). Children were at least 4 years old at time of registration. Children born in regions with population ascertainment and available denominator data were included in prevalence calculations (n=1033 twins, 81 triplets, and 11 quadruplets). Clinical data from children registered in all participating registers were described, including 2163 twins (56% male), 187 triplets (59% male), and 20 quadruplets (45% male). Results: The birth prevalence of CP was higher with increasing plurality (twins 6.5 per 1000 live births [95% confidence interval {CI} 6.1–6.9], triplets 17.1 [95% CI 13.6–21.2], quadruplets 50.7 [95% CI 25.6–88.9]); however, prevalence by gestational age was similar across all pluralities. Between 1992–1994 and 2007–2009, prevalence of CP among twins declined (p=0.001) but prevalence of CP among triplets did not change significantly over time (p=0.55). The distributions of Gross Motor Function Classification System, epilepsy, and impairments of intellect, vision, and hearing were similar regardless of plurality. Interpretation: The data combined from two CP register networks indicated that triplets and quadruplets had increased risk of CP compared to twins. The higher prevalence of CP in triplets and quadruplets is due to their higher risk of preterm birth. Prevalence of CP among twins significantly declined in Europe and Australia. Clinical outcomes were similar for all multiple births. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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., (© 2024 The Authors. Developmental Medicine & Child Neurology published by John Wiley & Sons Ltd on behalf of Mac Keith Press.)

Purpose: This study aims to investigate whether the treatment effects, in terms of goal attainment, transfer effects and impact on executive functions, of an intervention in children with cerebral palsy or spina bifida using the Cognitive Orientation to daily Occupational Performance (CO-OP) Approach are maintained over time, from immediately after the intervention to three months afterwards., Method: A three-month follow-up study, from an intervention using CO-OP. Thirty-four children (7-16 years) each identified four goals (one untrained to examine transfer) and participated in an eleven-session intervention. Assessments were performed at baseline, immediately after the intervention and at a three-month follow-up using the Canadian Occupational Performance Measure and the Performance Quality Rating Scale. Executive function and self-rated competence were assessed at the same timepoints., Results: Statistically significant and clinically relevant improvements in goal achievement were demonstrated for both trained and untrained goals after the intervention and were maintained at follow-up. The clinically relevant improvement in untrained goals continued to increase until follow-up. Self-rated competence increased after the intervention and was maintained at follow-up., Conclusion: The CO-OP intervention was effective in achieving and maintaining the children's own goals over time. The transfer effect was confirmed by higher goal attainment for the untrained goals.

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., What This Paper Adds: Cerebral palsy (CP) registers represent an increasing number of regions, including low- and middle-income, worldwide. Most registers collect the minimum data set of a CP register network. Research activities/output and impact are measured by most registers. The majority of registers involve people with lived experience in operation or research., (© 2023 The Authors. Developmental Medicine & Child Neurology published by John Wiley & Sons Ltd on behalf of Mac Keith Press.)

Introduction: Cerebral palsy (CP) is a nonprogressive movement disorder resulting from a prenatal or perinatal brain injury that benefits from early diagnosis and intervention. The timing of early CP diagnosis remains controversial, necessitating analysis of clinical features in a substantial cohort., Methods: We retrospectively reviewed medical records from a university hospital, focusing on children aged ≥24 months or followed up for ≥24 months and adhering to the International Classification of Diseases-10 for diagnosis and subtyping., Results: Among the 2012 confirmed CP cases, 68.84% were male and 51.44% had spastic diplegia. Based on the Gross Motor Function Classification System (GMFCS), 62.38% were in levels I and II and 19.88% were in levels IV and V. Hemiplegic and diplegic subtypes predominantly fell into levels I and II, while quadriplegic and mixed types were mainly levels IV and V. White matter injuries appeared in 46.58% of cranial MRI findings, while maldevelopment was rare (7.05%). Intellectual disability co-occurred in 43.44% of the CP cases, with hemiplegia having the lowest co-occurrence (20.28%, 58/286) and mixed types having the highest co-occurrence (73.85%, 48/65). Additionally, 51.67% (697/1,349) of the children with CP aged ≥48 months had comorbidities., Conclusions: This study underscores white matter injury as the primary CP pathology and identifies intellectual disability as a common comorbidity. Although CP can be identified in infants under 1 year old, precision in diagnosis improves with development. These insights inform early detection and tailored interventions, emphasizing their crucial role in CP management., (© 2024 The Author(s). Published by S. Karger AG, Basel.)

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"., Competing Interests: Declaration of competing interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2023 Elsevier Inc. All rights reserved.)

Background: Young people with chronic health conditions and disabilities rely on the healthcare system to maintain their best possible health. The appropriate delivery and utilization of healthcare services are key to improve their autonomy, self-efficacy and employment outcomes. The research question of our study is directed toward investigating if poor availability and accessibility of healthcare services in general, as identified by unmet needs in healthcare, are associated with dissatisfaction with healthcare., Methods: Within a European multicenter observational study, 357 young adults with cerebral palsy aged 19-28 were included. We assessed special healthcare needs, utilization of healthcare services, and satisfaction with healthcare applying the short-form of the YHC-SUN-SF, environmental and social variables (EAEQ) as well as indicators for severity of condition and functionality (e.g., GMFCS) of these participants based on a self-, assisted self- or proxy-reports. We used correlation analyses to explore associations between satisfaction with healthcare and respective indicators related to availability and accessibility of healthcare services as well as severity of the condition. In addition, we included reference values for satisfaction with heath care from young adults with various chronic conditions assessed within population-based surveys from some of the European countries included in the study., Results: We identified several unmet healthcare needs, especially for widely used and established services (e.g., physical therapy). Satisfaction with healthcare (YHC-SUN-SF general and subscale scores) was moderate to high and almost consistently better for the sample of young adults with cerebral palsy as compared to reference values for young adults with various chronic conditions assessed within general population surveys). Correlation coefficients between satisfaction with healthcare and utilization of services and (unmet) healthcare needs were low, also with different indicators for severity of the condition or functionality., Conclusion: Young adults with cerebral palsy reports of unmet healthcare needs varied largely but showed substantial deficits in some aspects. This seems to have no impact on the satisfaction with healthcare those patients currently receive. We conclude that these are two different constructs and somewhat independent indicators to evaluate the quality of healthcare. Clinicians and other practitioners should consider this distinction when monitoring patient needs in their daily practice., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2024 Muehlan, Alvarelhao, Arnaud, Cytera, Fauconnier, Himmelmann, Marcelli, Markwart, Rapp, Schmidt and Thyen.)

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.

CPUP is a combined follow-up program and national quality registry for cerebral palsy (CP). Since its inception in southern Sweden in 1994, CPUP has expanded geographically to cover all of Sweden, and similar programs are used in several northern European countries. Over 95% of all children with CP in Sweden, and a growing proportion of adults, are followed according to CPUP. The content of CPUP has been developed to involve most professions working with CP. CPUP has led to significant medical improvements. As an example, the percentage of individuals developing hip dislocation has decreased from 10% to 0.5%. The program's strengths include its interdisciplinary collaboration, user involvement, and the ability to inform and improve the quality of care systematically. Nevertheless, challenges include the need for ongoing funding and support. CPUP's success exemplifies how national quality registers can integrate into healthcare, enabling a shift from reactive to proactive care.

Objective: To describe limitations in range of motion (ROM) in middle-aged adults with cerebral palsy (CP), and identify associations with CP subtype, gross motor function, sex and age., Design: Population-based cohort study., Setting: Local and regional referral centers., Participants: Inclusion criteria: diagnosis of CP, born 1959 to 1978 and living in the county of Västra Götaland, Sweden. In the population-based register of CP in Western Sweden, 417 subjects were identified and 139 volunteered to participate. Adults with CP, born elsewhere, who had moved into the area were invited through patient organizations and habilitation units, and eleven chose to participate. In total 150 participants, age 37-58 years (mean 48) 65 women (43%) (N=150). All CP subtypes and Gross Motor Function Classification (GMFCS) levels were represented., Interventions: Not applicable., Main Outcome Measures: Passive ROM was measured in the upper and lower extremity and was classified into 4 levels (inspired by The Spinal Alignment and Range of Motion Measure and adapted from the values of the American Academy of Orthopedic Surgeons); good=1, vs mild=2, moderate=3 or severe=4 limitation. The results were summarized to obtain a total score of the participants' ROM limitations., Results: Moderate to severe limitations were present in 98 % of the participants. There was a correlation to GMFCS level in both the upper and lower extremity ( P <.001), but no correlation with age. Upper extremity limitations were most common in dyskinetic CP, lower extremity limitations were most common in dyskinetic CP and bilateral spastic CP. Men had more limitations in the lower extremity ( P =.001). The most common limitation in the lower extremity was hamstrings tightness (82%) and hip abduction (80%), and in the upper extremity, limited shoulder abduction (57%)., Conclusions: Limited ROM is common in adults with CP, most pronounced in shoulders, hip joints and hamstrings muscles, with no differences related to age in this age-span., (© 2023 The Authors.)

Objective: "SIGnature Libraries" channel the dynamism of academic society-based special interest groups (SIG) to systematically identify and provide user-oriented access to essential literature for a subspecialty field in a manner that keeps pace with the field's continuing evolution. The libraries include literature beyond clinical trial data to encompass historical context, diagnostic conceptualization, and community organization materials to foster a holistic understanding of how neurologic conditions affect individuals, their community, and their lived experience., Methods: Utilizing a modified-Delphi approach, Child Neurology Society's Cerebral Palsy (CP) SIG ( n = 75) administered two rounds of literature submissions and ratings. A final review by an 11-member international advisory group determined threshold ratings for resource inclusion and the library's final structure., Results: Seventy-nine articles were submitted for the first Delphi round and 22 articles for the second Delphi round. Survey response rates among SIG members were 29/75 for the first round and 24/75 for the second round. The advisory board added additional articles in the final review process in view of the overall project goal. A total of 60 articles were included in the final library, and articles were divided into seven sections and stratified by rating scores. A process for ongoing revisions of the library was determined. The library will be published on the Child Neurology Society website and made publicly accessible., Conclusions: The CP SIGnature Library offers learners an unprecedented resource that provides equitable access to latest consensus guidelines, existing seminal datasets, up-to-date review articles, and other patient care tools. A distinctive feature of the library is its intentional large scope and depth, presented in a stratified fashion relative to the consensus-determined importance of each article. Learners can efficiently navigate the library based on individual interests and goals, and the library can be used as core curriculum for CP education., Competing Interests: Conflict of Interest Drs. Kim, Chin, Fahey, Gelineau-Morel, Himmelmann, O’Malley, Oskoui, Shapiro, Shevell, Wilson, and Wiznitzer have no conflicts to report. Dr. Aravamuthan serves on the editorial board of Pediatric Neurology and Neurology; receives funding from the National Institute of Neurological Disorders and Stroke, Pediatric Epilepsy Research Foundation, and St. Louis Children’s Hospital Foundation; serves as consultant for Neurocrine Biosciences; receives royalties from UpToDate; and has an immediate family member on the Speaker’s Bureau for SK Life Science.

Background: Public 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., Objectives: We 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., Methods: The 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., Results: Analyses 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., Conclusions: Population-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., (© 2022 The Authors. Paediatric and Perinatal Epidemiology published by John Wiley & Sons Ltd.)

Purpose: Children with cerebral palsy (CP) or spina bifida (SB) often have executive dysfunction affecting activity performance. With the Cognitive Orientation to daily Occupational Performance (CO-OP) Approach, children find their own way to perform activities, using problem-solving strategies and meta-cognitive thinking. The present study aimed to investigate the effectiveness of the CO-OP Approach in children with CP or SB, compared with conventional rehabilitation, in achieving self-identified activity goals, and to explore any generalization and transfer effects., Method: Randomized controlled trial, CO-OP versus treatment as usual, 38 children (7-16 years) participated. Each child identified four goals (to study generalization and transfer, one remained untrained). Primary outcomes: Canadian Occupational Performance Measure (COPM) and Performance Quality Rating Scale (PQRS). Secondary outcomes assessed executive functions and self-rated everyday-life competence., Results: Self-rated goal attainment (COPM) was significantly greater for both trained and untrained goals in the CO-OP group compared with the control group. The rating of observed performance (PQRS) was significantly higher for trained goals in the CO-OP group. The CO-OP group experienced fewer problems in everyday life after treatment. Executive functions did not differ significantly between groups., Conclusion: CO-OP is more effective than ordinary treatment in achieving both trained and untrained goals.IMPLICATIONS FOR REHABILITATIONCO-OP enables children with CP (MACS levels I-III) or SB without intellectual disabilities to reach self-identified goals.CO-OP shows transfer effects to new activities and situations, which may enhance children's self-efficacy.CO-OP is an important complement to conventional rehabilitation services for children with CP and SB.

The aim of this population-based study was to describe the prevalence and characteristics of epilepsy in children with cerebral palsy (CP), focusing on antiseizure medication (ASM) and seizure outcome. Findings were related to CP type, gross motor function and associated impairments. Data on all 140 children with CP born in 2003-2006 were taken from the CP register of Western Sweden. Medical records were reviewed at ages 9-12 and 13-16 years. In total 43% had a diagnosis of epilepsy. Epilepsy was more common in children with dyskinetic CP, who more often had a history of infantile spasms, continuous spike-and-wave during sleep and status epilepticus. Neonatal seizures, severe intellectual disability, severe motor disability and autism were associated with a higher risk of epilepsy. Many children were on polytherapy, and valproate was frequently used, even in girls. At age 13-16 years, 45% of the children with epilepsy were seizure free for at least one year. Onset after 2 years of age, female sex and white matter injury were associated with good seizure outcome. Despite the risk of relapse, reduction or discontinuation of ASM could be an option in selected cases. It is important to optimize ASM and to consider the possibility of epilepsy surgery.

Aim: To describe epidemiology and characteristics of cerebral palsy (CP) in western Sweden 1954-2014., Methods: Population-based study covering 105 935 live births in the area in 2011-2014. Birth characteristics, neuroimaging findings and outcome were analysed and prevalence calculated. Non-parametric methods were used for group comparisons., Results: CP was diagnosed in 192 children. Crude prevalence had decreased to 1.81 per 1000 live births (p = 0.0067). Gestational age-specific prevalence for <28 gestational weeks was 74.8 per 1000 live births, 46.6 for 28-31 weeks, 5.8 for 32-36 weeks and 1.1 per 1000 for >36 weeks of gestation. Hemiplegia, found in 36.2%, had declined (p = 0.03). Diplegia was found in 36.2% and tetraplegia 5.3%. Dyskinetic CP accounted for 18.6% and ataxia for 3.7%. Neuroimaging revealed maldevelopments in 14%, white matter lesions in 44%, cortical/subcortical lesions in 13% and basal ganglia lesions in 17%. Prenatal aetiology was considered in 34%, peri- or neonatal in 48%, while in 18% aetiological period remained unclassified. Motor outcome in children who needed neonatal care had improved (p = 0.04). Motor function in dyskinetic CP had improved compared to previous cohorts (p = 0.008)., Conclusion: The prevalence of CP has declined, mainly in term-born and in hemiplegia, and motor severity has changed compared to previous cohorts., (© 2022 The Authors. Acta Paediatrica published by John Wiley & Sons Ltd on behalf of Foundation Acta Paediatrica.)

Aim: To determine trends and current estimates in regional and global prevalence of cerebral palsy (CP)., Method: A systematic analysis of data from participating CP registers/surveillance systems and population-based prevalence studies (from birth year 1995) was performed. Quality and risk of bias were assessed for both data sources. Analyses were conducted for pre-/perinatal, postnatal, neonatal, and overall CP. For each region, trends were statistically classified as increasing, decreasing, heterogeneous, or no change, and most recent prevalence estimates with 95% confidence intervals (CI) were calculated. Meta-analyses were conducted to determine current birth prevalence estimates (from birth year 2010)., Results: Forty-one regions from 27 countries across five continents were represented. Pre-/perinatal birth prevalence declined significantly across Europe and Australia (11 out of 14 regions), with no change in postneonatal CP. From the limited but increasing data available from regions in low- and middle-income countries (LMICs), birth prevalence for pre-/perinatal CP was as high as 3.4 per 1000 (95% CI 3.0-3.9) live births. Following meta-analyses, birth prevalence for pre-/perinatal CP in regions from high-income countries (HICs) was 1.5 per 1000 (95% CI 1.4-1.6) live births, and 1.6 per 1000 (95% CI 1.5-1.7) live births when postneonatal CP was included., Interpretation: The birth prevalence estimate of CP in HICs declined to 1.6 per 1000 live births. Data available from LMICs indicated markedly higher birth prevalence., What This Paper Adds: • Birth prevalence of pre-/perinatal cerebral palsy (CP) in high-income countries (HICs) is decreasing. • Current overall CP birth prevalence for HICs is 1.6 per 1000 live births. • Trends in low- and middle-income countries (LMICs) cannot currently be measured. • Current birth prevalence in LMICs is markedly higher than in HICs. • Active surveillance of CP helps to assess the impact of medical advancements and social/economic development. • Population-based data on prevalence and trends of CP are critical to inform policy., (© 2022 The Authors. Developmental Medicine & Child Neurology published by John Wiley & Sons Ltd on behalf of Mac Keith Press.)

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 Anterio-Posterior 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., (Copyright © 2022 The Authors. Published by Elsevier B.V. All rights reserved.)