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Aim: To investigate the use of general practitioners and urgent care centres (UCC) among children and adolescents with cerebral palsy (CP) compared to a control group, and per gross motor function level. Method: Data on children with CP born 1996 to 2014 were collected from the Norwegian Quality and Surveillance Registry for Cerebral Palsy. A control group was extracted from Statistics Norway. The date and diagnosis codes for general practitioner and UCC contacts from 2006 to 2015 were collected from the Norwegian Control and Payment of Health Reimbursement Database. Incidence rate ratios (IRR) for the number of contacts per person‐year with 95% confidence intervals (CI) were calculated using Poisson regression. Risk differences with 95% CI were used to compare cumulative diagnosis incidences between children with CP and the control group. Results: The study included 2510 children (1457 males; 58.1%) with CP and 12 041 (7003 males; 58.2%) without CP (mean age in both groups 7 years 2 months, SD 4 years 8 months, range 0–19 years), with 336 250 contacts. Children with CP had more general practitioner (IRR 1.47; 95% CI 1.29–1.67) and UCC (IRR 1.30; 95% CI 1.13–1.50) contacts than children without CP, for all ages. IRRs remained unchanged when comparing children with CP in Gross Motor Function Classification System (GMFCS) levels I and II to children without CP. Among children with CP, contact increased as GMFCS levels increased, and they were in contact most often for respiratory and general and unspecified diagnoses. The risk for epilepsy was highest for those in contact with general practitioners. Interpretation: Children with CP, including those with less severe motor impairments, contacted general practitioners and UCCs more than children without CP. However, contact increased as gross motor impairment increased. They had contact for many diagnoses, mostly respiratory. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Aim: To assess case fatality rate (CFR), infant mortality, and long‐term neurodevelopmental disorders (NDDs) after invasive group B streptococcal (GBS; Streptococcus agalactiae) infection in infants. Method: Children born in Norway between 1996 and 2019 were included. Data on pregnancies/deliveries, GBS infection, NDDs, and causes of death were retrieved from five national registries. The exposure was culture‐confirmed invasive GBS infection during infancy. Outcomes were mortality and NDDs, the latter at a mean age of 12 years 10 months. Results: Among 1 415 625 live‐born children, 866 (87%) of 1007 infants diagnosed with GBS infection (prevalence 0.71 per 1000) were included. The CFR was 5.0% (n = 43). GBS infection was associated with higher infant mortality (relative risk 19.41; 95% confidence interval [CI] 14.79–25.36) than the general population. Among survivors, 169 (20.7%) children were diagnosed with any NDD (relative risk 3.49; 95% CI 3.05–3.98). In particular, GBS meningitis was associated with high risks of attention‐deficit/hyperactivity disorder, cerebral palsy, epilepsy, hearing impairment, and pervasive and specific developmental disorder. Interpretation: The burden of invasive GBS infection during infancy is considerable and continues to affect children beyond infancy. These findings emphasize the need for new preventive strategies for disease reduction, and the need for survivors to be directly included into early detection pathways to access early intervention if required. What this paper adds: The burden of invasive group B streptococcal (GBS) infection in Norway is considerable.Of GBS infection survivors, 20.7% were diagnosed with neurodevelopmental disorders (NDDs) at mean age 12 years 10 months.Infants with GBS meningitis were more often diagnosed with NDDs.Absolute risks associated with GBS infections were highest for pervasive and specific developmental disorder, cerebral palsy, and attention‐deficit/hyperactivity disorder. [ABSTRACT FROM AUTHOR]

Aim: To study the prevalence, birth, and clinical characteristics of children with dyskinetic cerebral palsy (CP) in Norway compared with spastic quadriplegic CP and other spastic CP subtypes. Method: Data on children born from 1996 to 2015 were collected from the Norwegian Quality and Surveillance Registry for Cerebral Palsy and the Medical Birth Registry of Norway. Results: One hundred and seventy (6.8%) children had dyskinetic CP. The birth prevalence decreased during 1996 to 2015 from 0.21 to 0.07 per 1000 livebirths (p < 0.001). Dyskinetic CP was more often associated with term/post-term birth, and motor and associated impairments were more severe compared with spastic bilateral and unilateral CP, but less severe than spastic quadriplegic CP. On neuroimaging, grey matter injuries were most prevalent in dyskinetic CP (mainly basal ganglia/thalamus) and spastic quadriplegic CP (mainly cortico-subcortical), white matter injuries in spastic bilateral, and white and grey matter injuries were equally common in spastic unilateral CP. Normal neuroimaging and brain maldevelopment were present in 25% of children with dyskinetic CP. Interpretation: The decrease in birth prevalence of dyskinetic CP was probably due to improved antenatal and perinatal care. Potential sentinel events at term were more common in dyskinetic CP than other spastic CP subtypes. However, probable antenatal aetiologies were most prevalent. Motor and associated impairments were less severe in children with dyskinetic CP compared with spastic quadriplegic CP. [ABSTRACT FROM AUTHOR]

Cerebral palsy (CP) comprises a heterogeneous group of conditions recognized by disturbances of movement and posture and is caused by a non-progressive injury to the developing brain. Birth prevalence of CP is about 2–2.5 per 1,000 live births. Although the motor impairment is the hallmark of the diagnosis, individuals with CP often have other impairments, including cognitive ones. Cognitive impairments may affect communication, education, vocational opportunities, participation, and mental health. For many years, CP has been considered a "childhood disability," but the challenges continue through the life course, and health issues may worsen and new challenges may arise with age. This is particularly true for cognitive impairments, which may become more pronounced as the demands of life increase. For individuals with CP, there is no one-to-one correlation between cognition and functioning in other areas, and therefore, cognition must be individually assessed to determine what targeted interventions might be beneficial. To facilitate this for children with CP, a systematic follow-up protocol of cognition, the CP Cog , has been implemented in Norway and Sweden. However, no such protocol currently exists for adults with CP. Such discontinuity in healthcare services that results from lack of follow-up of cognitive functioning and subsequent needs for adjustments and interventions makes transition from pediatric to adult healthcare services challenging. As a result, a protocol for the surveillance of cognition in adults with CP, the CP Cog -Adult, has been developed. It includes assessment of verbal skills, non-verbal reasoning, visual–spatial perception, and executive functioning. It is recommended to perform these assessments at least once in young adulthood and once in the mid-fifties. This report describes the process of developing the CP Cog- Adult, which has a three-fold purpose: (1) to provide equal access to healthcare services to enable the detection of cognitive impairments; (2) to provide interventions that increase educational and vocational participation, enhance quality of life, and prevent secondary impairments; and (3) to collect systematic data for research purposes. The consent-based registration of data in the well-established Swedish and Norwegian national CP registries will secure longitudinal data from childhood into adulthood. [ABSTRACT FROM AUTHOR]

Background and Objectives: This is the first study assessing risk factors for cerebral palsy (CP) among children born in Moldova. The aim of this study was to identify and describe risk factors for cerebral palsy (CP) among children born in Moldova, which is one of the low-middle income countries in Europe. Materials and Methods: We identified 351 children with CP born during 2009 and 2010 in Moldova. Detailed information on 417 children without CP served as a reference group. Logistic regression analyses were applied to the calculate crude and adjusted odds ratios (OR) for CP with 95% confidence intervals (CI) in addition to attributable fraction (AF). Results: Among children with CP (40.5% girls), 26% had spastic unilateral, 54% bilateral, 13% dyskinetic, 5% ataxic and 2% unclassified CP. Significant risk factors for CP included maternal alcohol consumption during pregnancy (OR 1.7, p = 0.002), maternal hypertension (OR 2.0, p < 0.001), children born to mothers from the rural areas (OR 1.6, p < 0.001), maternal age ≥35 years (OR 0.6, p = 0.018), maternal epilepsy (OR 4.3, p < 0.001), breech delivery (OR 3.1, p = 0.001), home births (OR 6.3, p = 0.001), umbilical cord around neck (OR 2.2, p < 0.001), AVD (OR 3.1, p < 0.001), male gender (OR 1.3, p < 0.001), SGA (OR 1.3, p = 0.027), multiple gestations (OR 1.7, p < 0.001) and hyperbilirubinemia (OR 4.5, p < 0.001). Multivariable analyses showed that the AF of CP was 64% for rural residence (OR 2.8, p = 0.002), 87% for home birth (7.6, p = 0.005), 79% for pre-labor rupture of membrane (OR 4.9, p = 0.001), 66% for breech delivery (OR 2.9, p = 0.002) and 81% for hyperbilirubinemia (OR 5.4, p < 0.001). Conclusions: A combination of factors related to the mother, the delivery and the child were risk factors for CP in Moldova, many of them possibly avoidable. Improved pregnancy and maternity care would potentially reduce the risk of CP. A national CP registry in Moldova is suggested as an opportunity to follow up on these findings. [ABSTRACT FROM AUTHOR]

Abstract Background Hip dislocation is a serious complication among children with cerebral palsy (CP). The aim of this study was to compare the prevalence of hip dislocation among children with CP in an area providing regular care with an area providing hip surveillance services. Methods This is a cross-sectional study in seven Norwegian counties providing regular care and one Swedish healthcare region where a hip surveillance programme was introduced in 1994. Data were provided by the Norwegian Cerebral Palsy Register and the CP Register in Southern Sweden. Children born 1996 - 2003 with moderate to severe CP, defined as Gross Motor Classification System (GMFCS) levels III - V, were included. In all, 119 Norwegian and 136 Swedish children fulfilled the criteria. In Norway, data on hip operations and radiographs of the hips were collected from medical records, while these data are collected routinely in the Swedish register. The hip migration percentage was measured on the recent radiographs. Hip dislocation was defined as a migration percent of 100%. Results The proportion of children at GMFCS levels III - V was 34% in the Norwegian and 38% in the Swedish population. In the Norwegian population, hip dislocation was diagnosed in 18 children (15.1%; CI: 9.8 - 22.6) compared with only one child (0.7%; 95% CI: 0.01 - 4.0) in Southern Sweden (p = < 0.001). Hip surgery was performed in 53 (44.5%) of the Norwegian children and in 43 (32%) of the Swedish children (p = 0.03). The total number of hip operations was 65 in Norway and 63 in Sweden. Norwegian children were first operated at a mean age of 7.6 years (SD: 2.9) compared with 5.7 years (SD: 2.3) in Sweden (p = 0.001). Conclusions The surveillance programme reduced the number of hip dislocations and the proportion of children undergoing hip surgery was lower. However, with the surveillance programme the first operation was performed at a younger age. Our results strongly support the effectiveness of a specifically designed follow-up programme for the prevention of hip dislocation in children with CP.

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. What this paper adds: Congenital anomalies were reported in 23% of children with pre‐ or perinatally acquired cerebral palsy.A higher proportion of children born at or near term had anomalies.The most common type of anomalies were isolated cerebral anomalies.Clinical outcomes were more severe for children with congenital anomalies (particularly cerebral). What this paper adds: Congenital anomalies were reported in 23% of children with pre‐ or perinatally acquired cerebral palsy.A higher proportion of children born at or near term had anomalies.The most common type of anomalies were isolated cerebral anomalies.Clinical outcomes were more severe for children with congenital anomalies (particularly cerebral). This article is commented on by Kirby on pages 366–367 of this issue. [ABSTRACT FROM AUTHOR]

Aim: To describe the total burden of disease in individuals with cerebral palsy (CP) in Norway.Method: A comprehensive set of disorder categories were extracted from the Norwegian Patient Registry using International Statistical Classification of Diseases, 10th Revision diagnosis codes for individuals born between 1996 and 2010 who received specialist healthcare between 2008 and 2017 (0-21y). Individuals with CP were identified through a validation study in cooperation with the Cerebral Palsy Registry of Norway. Risk differences (proportions of individuals recorded with each disorder) were used to compare individuals with CP with the general population without CP.Results: The study included 966 760 individuals. Among these, 2302 (0.24%) had CP (1330 males, 972 females). Of the individuals with CP, 95.0% were recorded with one or more comorbidity, and the risks of medical, neurological, and mental/behavioural disorders were higher compared with the risks in the general population. The most common neurological and mental/behavioural disorders were cocausal, i.e. attributed to the same injury to the developing brain that caused CP, while medical disorders were most often complications of CP or coincidentally co-occurring with CP.Interpretation: Individuals with CP have a considerably higher burden of medical, neurological, and mental/behavioural disorders compared with the general population, including disorders that are not directly caused by, or complications to, the brain injury.What This Paper Adds: Nearly all individuals with cerebral palsy (CP) had one or more comorbidity. Fifty-two per cent had at least one comorbidity attributed to the same cause as CP, complications of CP, and coincidentally co-occurring with CP. Risks of medical, neurological, and mental/behavioural disorders were considerably higher than in the general population. [ABSTRACT FROM AUTHOR]