Use of primary health care services among children and adolescents with cerebral palsy.

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.

Prevalence, birth, and clinical characteristics of dyskinetic cerebral palsy compared with spastic cerebral palsy subtypes: A Norwegian register-based study.

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. WHAT THIS PAPER ADDS: Birth prevalence of those with dyskinetic and spastic bilateral cerebral palsy (CP) in Norway decreased between 1996 and 2015. Potential sentinel events at term were more common in dyskinetic CP. Nonetheless, probable antenatal aetiologies were most prevalent in dyskinetic CP. Basal ganglia/thalamus lesions were more common in dyskinetic than spastic quadriplegic CP. Motor and associated impairments were milder in dyskinetic than spastic quadriplegic CP.

Cerebral palsy registers around the world: A survey.

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.

Cerebral palsy in children born after assisted reproductive technology in Norway: Risk, prevalence, and clinical characteristics.

INTRODUCTION: The aim was to investigate the risk, prevalence, and clinical characteristics of cerebral palsy among children born after assisted reproductive technology (ART) in Norway. MATERIAL AND METHODS: All liveborn children from 2002 to 2015 were included. Information was collected from the Medical Birth Registry of Norway, linked to the Norwegian Quality and Surveillance Registry for Cerebral Palsy as of December 31, 2022. Logistic regression analyses were used to calculate the prevalence of cerebral palsy per 1000 live births after ART and natural conception with birth year as covariate, crude odds ratios (OR) for cerebral palsy among children born after ART using children born after natural conception as reference, and OR adjusted for potential confounders, with 95% confidence intervals (CI). Potential mediators of the association were studied in stratified analyses. Descriptive statistics were used to compare proportions in clinical characteristics among children with cerebral palsy born after ART and natural conception. RESULTS: Among 833 645 livebirths, 23 645 children were born after ART and of the latter 97 were diagnosed with cerebral palsy. The overall prevalence of cerebral palsy after ART was 4.10 per 1000 live births (95% CI 3.36-5.00), decreasing from 7.79 per 1000 in 2002 to 3.55 in 2015. Compared with children born after natural conception, the OR for cerebral palsy was 2.01 (95% CI 1.63-2.47) adjusted for mother's age at birth, parity, and pre-pregnancy health. When restricted to singletons born at term, the adjusted OR for cerebral palsy was 1.13 (95% CI 0.76-1.69). The distribution of cerebral palsy subtypes and the severity of gross and fine motor function and associated impairments did not differ significantly between children with cerebral palsy born after ART and natural conception. CONCLUSIONS: Children born after ART had a risk of cerebral palsy that was twice that of children born after natural conception. The increased risk of cerebral palsy after ART is likely attributed to multiple pregnancies and preterm births. The prevalence of cerebral palsy after ART decreased significantly during the study period, despite an increased use of ART in the population. The distribution of clinical characteristics did not differ between children with cerebral palsy born after ART and those born after a natural conception, suggesting that the risk factors for, and causes of cerebral palsy were similar.

Norwegian paediatric habilitation centres judge their own competence on cerebral visual impairment as limited.

AIM: Cerebral visual impairment (CVI), a frequently occurring functional impairment in children with neurodevelopmental disorders, leads to communicative, social and academic challenges. In Norway, children with neurodevelopmental disorders are assessed at paediatric habilitation centres. Our aims were to explore how CVI is identified, how paediatric habilitation centres assess their CVI competence and the reported prevalence of CVI among children with cerebral palsy. METHODS: An electronic questionnaire was sent to all 19 Norwegian paediatric habilitation centre leaders in January 2022. The results were analysed quantitatively and qualitatively. The prevalence of CVI among children with cerebral palsy was estimated using register-based data. RESULTS: The questionnaire was answered by 17. Only three judged their habilitation centre as having sufficient competence on CVI. None of the centres used screening questionnaires systematically, and 11 reported that CVI assessment was not good enough. Awareness that a child may have CVI typically occurred during examinations for other diagnoses. The prevalence of CVI among children with cerebral palsy was only 8%, while CVI status was unknown in 33%. CONCLUSION: Better knowledge and assessment of CVI at Norwegian paediatric habilitation centres are needed. CVI appears to be often overlooked in children with neurodevelopmental disorders.

High occurrence of perinatal risk factors and more severe impairments in children with postneonatal cerebral palsy in Norway.

AIM: To describe causal events, perinatal risk factors and clinical characteristics in children with postneonatal cerebral palsy (PNCP). METHODS: Population-based registry study of Norwegian children born 1999-2013. Prevalence, causal events and clinical characteristics of PNCP were described. The occurrence of perinatal risk factors for CP was compared with the general population. RESULTS: Among 1710 children with CP, 67 had PNCP (3.9%; 0.75 per 10,000 livebirths [95%CI: 0.59-0.96]). The prevalence of PNCP decreased during the study period. Leading causal events were cerebrovascular events (32.8%), head injuries/other accidents (22.4%), infections (19.4%) and hypoxic events (14.9%). Spastic hemiplegic (53.7%) or spastic quadriplegic/dyskinetic CP (31.3%) was more common in children with PNCP than non-PNCP (42.3% and 20.1%, respectively; p < 0.001). Children with PNCP had more severe motor and associated impairments. Perinatal risk factors for CP were more common in children with PNCP than in the general population. CONCLUSION: The prevalence of PNCP among Norwegian children was low and decreasing. The main causes were cerebrovascular events and head injuries/other accidents. Although spastic hemiplegic CP was the dominating subtype, children with PNCP had more severe motor and associated impairments than children with non-PNCP, as well as a higher occurrence of perinatal risk factors than in the general population.

Incidence of invasive Group B Streptococcal infection and the risk of infant death and cerebral palsy: a Norwegian Cohort Study.

BACKGROUND: Group B Streptococcus (GBS) is the leading cause of invasive neonatal infection worldwide. In high-income countries mortality rates are 4-10%, and among survivors of GBS meningitis 30-50% have neurodevelopmental impairments. We hypothesized that invasive GBS infection was associated with increased risk of infant mortality and cerebral palsy (CP). METHODS: All children born alive in Norway during 1996-2012 were included. Data were collected from three national registers. Invasive GBS infection during infancy was categorized into early-onset disease (EOD), late-onset disease (LOD), and very late-onset disease (VLOD). Primary outcomes were infant mortality and CP. RESULTS: Invasive GBS infection was diagnosed in 625 children (incidence: 0.62 per 1000 live births; 95% confidence interval (CI): 0.57-0.67). The incidence of EOD was 0.41 (0.37-0.45), of LOD 0.20 (0.17-0.23), and of VLOD 0.012 (0.007-0.021). The annual incidence of LOD increased slightly. Among infected infants, 44 (7%) died (odds ratio (OR): 24.5; 95% CI: 18.0-33.3 compared with the background population). Among survivors, 24 (4.1%) children were later diagnosed with CP, compared with 1887 (0.19%) in the background population (OR: 22.9; 95% CI: 15.1-34.5). CONCLUSION: Despite a relatively low incidence of invasive GBS infection in Norway, the risk of death and CP remains high. Improvements in prevention strategies are needed. IMPACT: During the first decade of the twenty-first century, invasive GBS disease in infancy is still associated with high mortality. Despite the overall low incidence of invasive GBS disease, the incidence of LOD increased during the study period. The finding that invasive GBS infection in the neonatal period or during infancy is associated with an excess risk of CP, comparable to the risk following moderate preterm birth and moderate low Apgar scores, adds to the existing literature. The results of this study emphasize the importance of adhering to guidelines and the need for better prevention strategies.

Treatment of spasticity in children and adolescents with cerebral palsy in Northern Europe: a CP-North registry study.

BACKGROUND: Spasticity is present in more than 80% of the population with cerebral palsy (CP). The aim of this study was to describe and compare the use of three spasticity reducing methods; Botulinum toxin-A therapy (BTX-A), Selective dorsal rhizotomy (SDR) and Intrathecal baclofen therapy (ITB) among children and adolescents with CP in six northern European countries. METHODS: This registry-based study included population-based data in children and adolescents with CP born 2002 to 2017 and recorded in the follow-up programs for CP in Sweden, Norway, Denmark, Iceland and Scotland, and a defined cohort in Finland. RESULTS: A total of 8,817 individuals were included. The proportion of individuals treated with SDR and ITB was significantly different between the countries. SDR treatment ranged from 0% ( Finland and Iceland) to 3.4% (Scotland) and ITB treatment from 2.2% (Sweden) to 3.7% (Denmark and Scotland). BTX-A treatment in the lower extremities reported 2017-2018 ranged from 8.6% in Denmark to 20% in Norway (p < 0.01). Mean age for undergoing SDR ranged from 4.5 years in Norway to 7.3 years in Denmark (p < 0.01). Mean age at ITB surgery ranged from 6.3 years in Norway to 10.1 years in Finland (p < 0.01). Mean age for BTX-A treatment ranged from 7.1 years in Denmark to 10.3 years in Iceland (p < 0.01). Treatment with SDR was most common in Gross Motor Function Classification System (GMFCS) level III, ITB in level V, and BTX-A in level I. The most common muscle treated with BTX-A was the calf muscle, with the highest proportion in GMFCS level I. BTX-A treatment of hamstring and hip muscles was most common in GMFCS levels IV-V in all countries. CONCLUSION: There were statistically significant differences between countries regarding the proportion of children and adolescents with CP treated with the three spasticity reducing methods, mean age for treatment and treatment related to GMFCS level. This is likely due to differences in the availability of these treatment methods and/or differences in preferences of treatment methods among professionals and possibly patients across countries.

Point prevalence and motor function of children and adolescents with cerebral palsy in Scandinavia and Scotland: a CP-North study.

AIM: To describe the point prevalence of cerebral palsy (CP) and distribution of gross and fine motor function in individuals registered in a CP-North surveillance programme. METHOD: Aggregate data of individuals with CP aged 6 to 19 years, sex, CP subtype, and gross and fine motor function levels were collected from each programme. Overall and age-specific point prevalence of CP was calculated for each programme using 95% confidence intervals. Logistic regression was used to estimate prevalence and CP subtypes with age as the covariate variable. Pearson χ2 tests were used to compare the distributions of CP subtypes, Gross Motor Function Classification System (GMFCS) levels, and Manual Ability Classification System (MACS) levels by age and between programmes. RESULTS: Among 3 759 138 individuals residing in Scandinavia and Scotland, 8278 had a diagnosis of CP (57-59% were males). The overall point prevalence of CP ranged from 2.13 to 2.32 per 1000 residents. Age-specific prevalence in each programme varied with the exception of Denmark. While the proportions of bilateral spastic CP were similar between programmes, there were variations in all other CP subtypes and in GMFCS and MACS levels. INTERPRETATION: While the results of this study may reflect real differences in CP populations between countries, they may not be clinically relevant. The variations may be attributable to differences in the year when each programme was first established, different data collection methods, and country-specific governmental policies.

Congenital anomalies in children with postneonatally acquired cerebral palsy: an international data linkage study.

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. WHAT THIS PAPER ADDS: One-quarter of children with postneonatally acquired cerebral palsy (CP) have a major congenital anomaly. Cardiac anomalies, often severe, are the most common anomalies. Causes of postneonatally acquired CP differ between children with and without congenital anomalies.

Congenital anomalies in children with pre- or perinatally acquired cerebral palsy: an international data linkage study.

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).

Risk Factors for Cerebral Palsy in Moldova.

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.

Access to Intrathecal Baclofen Treatment for Children with Cerebral Palsy in European Countries: An SCPE Survey Reveals Important Differences.

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.

The Origin of the Cerebral Palsies: Contribution of Population-Based Neuroimaging Data.

BACKGROUND: Surveillance of cerebral palsy in Europe (SCPE) presents the first population-based results on neuroimaging findings in children with cerebral palsy (CP) using a magnetic resonance imaging classification system (MRICS). METHOD: MRIs of children with CP born between 1999 and 2009 from 18 European countries were analyzed. MRICS identifies patterns of brain pathology according to timing during brain development which was analyzed with respect to CP subtypes and gestational age. RESULTS: MRIs or written reports from 3,818 children were available. The main clinical characteristics were similar to the 5,415 without such data. Most frequent was predominant white matter injury (49%), followed by predominant gray matter injury (21%). Maldevelopments were found in 11% of cases. Miscellaneous findings were present in 8.5% and normal findings in 10.6%. MRI patterns of children with unilateral spastic, bilateral spastic, and dyskinetic CP were mainly lesional (77, 71, and 59%, respectively), whereas children with ataxic CP had more maldevelopments, miscellaneous, and normal findings (25, 21, and 32%, respectively). In children born preterm, predominant white matter injury was most prevalent (80% in children born <32 weeks of gestation). CONCLUSION: Analysis of MRI in the European CP database identified CP as a mainly lesional condition on a large population basis, maldevelopments were relatively uncommon. An exception was ataxic CP. Children born preterm mostly presented with a lesion typical for their gestational age (GA) at birth. The decreasing prevalence of CP in this group suggests that progress in perinatal and neonatal medicine may lead to a reduction of these lesions.

Comorbidities in cerebral palsy: a patient registry study.

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.

Prelabor rupture of membranes and the association with cerebral palsy in term born children: a national registry-based cohort study.

BACKGROUND: Guidelines regarding management of prelabor rupture of membranes (PROM) at term vary between immediate induction and expectant management. A long interval between PROM and delivery increases the risk for perinatal infections. Severe perinatal infections are associated with excess risk for cerebral palsy (CP) and perinatal death. We investigated if increasing intervals between PROM and delivery were associated with perinatal death or CP. METHODS: Eligible to participate in this population-based cohort-study were term born singletons without congenital malformations born in Norway during 1999-2009. Data was retrieved from the Medical Birth Registry of Norway (MBRN) and the Cerebral Palsy Register of Norway. In line with the registration in the MBRN, intervals between PROM and delivery of more than 24 h was defined as 'prolonged' and intervals between 12 and 24 h as 'intermediate'. Outcomes were stillbirth, death during delivery, neonatal mortality and CP. Logistic regression was used to calculate odds ratio (OR) with 95% confidence intervals (CI) for adverse outcomes in children born after prolonged and intermediate intervals, compared with a reference group comprising all children born less than 12 h after PROM or without PROM. RESULTS: Among 559,972 births, 34,759 children were born after intermediate and 30,332 were born after prolonged intervals. There was no association between increasing intervals and death during delivery or in the neonatal period, while the prevalence of stillbirths decreased with increasing intervals. Among children born after intermediate intervals 38 (0.11%) had CP, while among those born after prolonged intervals 46 (0.15%) had CP. Compared with the reference group, the OR for CP was 1.16 (CI; 0.83 to 1.61) after intermediate and 1.61 (CI; 1.19 to 2.18) after prolonged intervals. Adjusting for antenatal factors did not affect these associations. Among children with CP the proportion with diffuse cortical injury and basal ganglia pathology on cerebral MRI, consistent with hypoxic-ischemic injuries, increased with increasing intervals. CONCLUSION: Intervals between PROM and delivery of more than 24 h were associated with CP, but not with neonatal mortality or death during delivery. The inverse association with stillbirth is probably due to reverse causality.

Flaunting our assets. Making the most of the Nordic registry goldmine: Cerebral palsy as an example.

Aims:To describe the early experiences of a Nordic multidisciplinary cerebral palsy (CP) registry research program combining data from national medical quality registries, follow-up programs and cohort data, in addition to data from other national registries; to explore the scientific and practical uses of such research, and provide recommendations for facilitating similar work in the future. Methods: The work was divided into three themes: medical outcomes, social and public health outcomes, and health economics; and three cross-cutting teams: a reference team, a challenge team, and a communication and dissemination team. Initially each country will perform domestic research, and in the second stage data will be merged across all Nordic countries. Data from national registries with vital statistics, education and work, social benefits, and healthcare will be used. Comparisons will be matched for both the individuals with CP and their parents. Results: Initial work has been done on agreeing which variables to request from the respective agencies and planning the correct procedures and steps required to acquire the data. As of 2018, Sweden, Norway, and Finland have received approved ethics board applications. Iceland and Denmark are waiting for their approvals. A webpage and a platform for internal communication have been created. Conclusions: Nordic register research has great potential. Linking national CP quality registries and follow-up programs with other large national registries holds particular promise because problems identified through research can be applied at a population level. It is imperative that ethical clearance and data delivery processes are streamlined and transparent, and that data variables are measured the same way in the different countries.

Early intervention and follow-up programs among children with cerebral palsy in Moldova: potential impact on impairments?

AIM: To study whether early intervention services (EI) and a follow-up program (FU) influence outcomes of children with cerebral palsy (CP) in Moldova. METHODS: Records from 351 children with CP in Moldova born during 2009 and 2010 were retrieved from hospital and orphanage archives between 1 July 2016 and 30 September 2017. We investigated the proportion enrolled in EI and FU at the Early Intervention Centre Voinicel and at the Institute of Mother and Child in 2009-2012. Logistic regression analyses were applied to calculate crude and adjusted odds ratios (OR) with 95% confidence intervals (CI) for outcomes in children enrolled and not enrolled. RESULTS: Among all children with CP, 166 (47%) were enrolled in EI and FU. Of the 51 children born extremely preterm (gestational age ≤ 31 weeks), 46 (90%) were enrolled, compared to 97 (39%) of the 250 children born at term. Among 110 non-walking children with CP, 82 (74%) were enrolled into EI and FU, compared to 84 (35%) of 241 able to walk. There was no difference in outcomes of cognition, communication, vision and hearing impairments between those enrolled or not enrolled in EI and FU. However, the subgroup analyses showed that the risk of contractures was 11 times higher among non-walking children who were not enrolled in EI and FU programs (OR = 10.931, 95% CI 2.328-51.328, p = 0.002). CONCLUSION: In Moldova, EI and FU seem to be offered mostly to extremely preterm and non-walking children with CP. The results indicate a decreased risk for contractures in these children.

Use of botulinum toxin A in children with cerebral palsy. / Bruk av botulinumtoksin A til barn med cerebral parese.

BACKGROUND: For more than 20 years, intramuscular injections of botulinum toxin A have been an established treatment for spasticity in children with cerebral palsy. We investigated the proportion of children with cerebral palsy who receive such treatment in Norway and the guidelines that apply to the treatment. MATERIAL AND METHOD: Data from the five-year registration in the Cerebral Palsy Registry of Norway were used to investigate the proportion of children with cerebral palsy born in the period 1999-2010 treated with botulinum toxin A, and whether there were any variations in the proportion of children treated between the habilitation centres. We conducted an online survey to identify the treatment guidelines that were applied in all of the 21 habilitation centres. RESULTS: A total of 1 414 children (average age 6.3 years) were included, of whom 775 (55 %) had been treated with botulinum toxin A. The proportion of children who received treatment varied considerably between the habilitation centres (38-80 %; p < 0.001). The maximum dose of botulinum toxin A per treatment per patient was 200-600 units of Botox. Five centres reported to have written guidelines for the treatment indication. INTERPRETATION: The proportion of children with cerebral palsy who are treated with botulinum toxin A varies considerably between Norwegian habilitation centres.