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

BackgroundSpasticity 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.MethodsThis 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.ResultsA 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 (pPeer reviewe

Severe Congenital Heart Defects and Cerebral Palsy

Objective: To report the prevalence of cerebral palsy (CP) in children with severe congenital heart defects (sCHD) and the outcome/severity of the CP. Methods: Population-based, data linkage study between CP and congenital anomaly registers in Europe and Australia. The EUROCAT definition of severe CHD (sCHD) was used. Linked data from 4 regions in Europe and 2 in Australia were included. All children born in the regions from 1991 through 2009 diagnosed with CP and/or sCHD were included. Linkage was completed locally. Deidentified linked data were pooled for analyses. Results:The study sample included 4989 children with CP and 3684 children with sCHD. The total number of livebirths in the population was 1 734 612. The prevalence of CP was 2.9 per 1000 births (95% CI, 2.8-3.0) and the prevalence of sCHD was 2.1 per 1000 births (95% CI, 2.1-2.2). Of children with sCHD, 1.5% (n = 57) had a diagnosis of CP, of which 35 (61%) children had prenatally or perinatally acquired CP (resulting from a brain injury at £28 days of life) and 22 (39%) children had a postneonatal cause (a brain injury between 28 days and 2 years). Children with CP and sCHD more often had unilateral spastic CP and more intellectual impairments than children with CP without congenital anomalies.Conclusions: In high-income countries, the proportion of children with CP is much higher in children with sCHD than in the background population. The severity of disease in children with CP and sCHD is milder compared with children with CP without congenital anomaliesFunding support received for the overarching Comprehensive CA-CP Study: the Cerebral Palsy Alliance Research Foundation (The Comprehensive CA-CP Study PG1215 and PG2816 and salary support from Cerebral Palsy Alliance Research Foundation (S.G., S.M., H.S.S., N.B.).info:eu-repo/semantics/publishedVersio

Surveillance of cerebral palsy in Norway; a national registry-based study

Well-established cerebral palsy (CP) registries provide a solid framework to monitor, study and report on CP over time. This includes its causes, diagnosis, clinical manifestations and treatments/interventions. This thesis is a national registry-based study of individuals with CP born 1996 to 2010 and recorded in the Cerebral Palsy Registry of Norway (CPRN) and the Norwegian Patient Registry (NPR). Data from both registries were used to ensure that the studies were population-based. This was performed by linking the CPRN to the NPR, and validating all CP diagnosis codes recorded in the NPR, but not in the CPRN. Article I describes the results of the validation study, and the implications a complete and correct population can have on the calculation of prevalence estimates. The accurate prevalence of CP for individuals born in Norway during this study period is 2.4 per 1000 live births. Article II continued with a more in-depth investigation of the trends in prevalence and severity of CP, using clinical data from the CPRN and supplemented with data from the NPR. We found a significant decline in the prevalence of CP from 2.6 per 1000 live births in 1999 to 1.9 in 2010. This was mostly attributed to a decrease in the more severe bilateral spastic CP subtype (characterized by muscular stiffness on both sides of the body). We also found a decrease in the proportion of individuals with CP and severe motor impairments, epilepsy, intellectual disability and reduced speech. This is the first time a reduction in the prevalence and severity of CP has been reported in Norway. The decline was most likely due to improvements in antenatal, obstetric and neonatal care that have been introduced nationwide throughout the past few decades. To support these findings, we also explored the status of perinatal health for all children born in Norway during this study period, using summary statistics from the Medical Birth Registry of Norway Statistics Bank. There, we found a decline in the prevalence of children born preterm, mothers with preeclampsia during pregnancy and with multiples, all of which are well-known risk factors for CP. In addition, there was also a decline in perinatal mortality. Nonetheless, in article III we found that individuals who did receive a diagnosis of CP during this study period have a considerably higher burden of disease when compared with their peers in the general population without CP. Nearly all individuals with CP were recorded in the NPR with one or more disorders in addition to their CP condition (comorbidities), whether mild-to-severe or transient-to-chronic. When compared with the risks in the general population, individuals with CP had an excess risk for multiple medical, neurological and mental/behavioral disorders. As expected, many of the comorbidities were associated with the injury to the developing brain that caused CP (cocausal) or complications of the main CP condition. However, we also found that many comorbidities were also not intuitively related to CP. This thesis demonstrates the importance of continual surveillance of the CP population in Norway. By monitoring fluctuations in the prevalence and clinical manifestations of CP over time, we can provide up-to-date information to healthcare professionals and support their work in preventing or minimizing the impact of CP

Decreasing prevalence and severity of cerebral palsy in Norway among children born 1999 to 2010 concomitant with improvements in perinatal health

Background The aim of our study was to explore if the prevalence and clinical characteristics of cerebral palsy (CP), concomitant with perinatal health indicators in the general population, remained unchanged for children born in Norway between 1999 and 2010. Methods This national multi-register cohort study included 711 174 children recorded in the Medical Birth Registry of Norway. Among these, 707 916 were born alive, and 1664 had a validated diagnosis of CP recorded in the Cerebral Palsy Registry of Norway and/or the Norwegian Patient Registry. Prevalence per 1000 live births as a function of birth year was analyzed using logistic regression with fractional polynomials to allow for non-linear trends. Chi-square statistics were used to estimate trends in proportions of clinical characteristics. Results The prevalence of CP in Norway decreased from 2.62 per 1000 live births in 1999 to 1.89 in 2010. The reduction was most evident among children with bilateral CP, in particular those with diplegia. During the study period, the proportions of children with severe motor impairments, epilepsy, intellectual impairment and reduced speech also decreased. At the same time, perinatal mortality has decreased in Norway, along with the proportion of women with preeclampsia, children born preterm or as a multiple. Conclusion We observed a significant decrease in the prevalence and severity of CP subtypes and associated impairments among children with CP in Norway. This coincided with improvements in perinatal health indicators in the general population. These improvements are most likely explained by advancements in obstetric and neonatal care

Completeness and correctness of cerebral palsy diagnoses in two health registers: implications for estimating prevalence

Aim To assess completeness and correctness of cerebral palsy (CP) diagnoses in the Cerebral Palsy Register of Norway (CPRN) and the Norwegian Patient Register (NPR), and to estimate CP prevalence. Method Among 747 883 Norwegian residents born from 1996 to 2007, 2231 had a diagnosis of CP in the NPR while 1441 were registered in the CPRN. Children registered in the CPRN were considered to have a valid CP diagnosis. For those with a diagnosis of CP only in the NPR, two paediatricians reviewed the hospital records. The prevalence rate of CP with 95% confidence intervals (CI) was calculated on the basis of the combined data sets. Results One thousand three hundred and ninety-eight children were registered with a diagnosis of CP in both registers, 43 children were only registered in the CPRN, and 824 only in the NPR. The review of hospital records revealed that 464 (59.5%) had CP. Thus, the NPR was 98% complete, and for 86% the diagnosis was correct. The completeness of the CPRN was 76%, while the diagnosis was considered correct for all children (100%). The resulting prevalence of CP was 2.5 (95% CI 2.4–2.7) per 1000. Interpretation To gain accurate estimates of prevalence rates of CP, it is essential to combine data sources and to validate register data

The implementation of systematic monitoring of cognition in children with cerebral palsy in Sweden and Norway

Purpose Children with cerebral palsy (CP) are at risk of cognitive impairments and need to be cognitively assessed to allow for individualized interventions, if applicable. Therefore, a systematic protocol for the follow-up of cognition in children with CP, CPCog, with assessments offered at five/six and 12/13 years of age, was developed. This report presents and discusses assessment practices in Sweden and Norway following the introduction of CPCog and a quality improvement project in Norway aimed at increasing the number of children offered cognitive assessments. Materials and methods A questionnaire investigating assessment practices was sent to pediatric habilitation centers in Sweden and Norway. In Norway, the habilitation centers also participated in a quality improvement project aimed at increasing adherence to the CPCog protocol. Results Of the respondents, 64–70% report that they assess cognition in children with all degrees of motor impairment, and 70–80% assess at the ages recommended in CPCog. Following the quality improvement project in Norway, the percentage of children assessed increased from 34 to 62%. Conclusions The findings illustrate that the provision of information is not sufficient to change practice. Implementation of new re/habilitation procedures is aided by targeting health care practices individually

Bruk av botulinumtoksin A til barn med cerebral parese

BAKGRUNN Intramuskulære injeksjoner med botulinumtoksin A har i over 20 år vært en etablert behandling av spastisitet hos barn med cerebral parese. Vi undersøkte hvor mange barn med cerebral parese i Norge som får slik behandling, og hvilke retningslinjer som gjelder for behandlingen. MATERIALE OG METODE Data fra femårsregistreringen til Cerebral pareseregisteret i Norge ble benyttet til å undersøke hvor mange barn med cerebral parese født i perioden 1999–2010 som var blitt behandlet med botulinumtoksin A, og om andelen behandlede barn varierte mellom habiliteringssentrene. I en nettbasert spørreundersøkelse kartla vi hvilke retningslinjer for behandlingen alle 21 habiliteringssentrene fulgte. RESULTATER I alt 1 414 barn (gjennomsnittsalder 6,3 år) ble inkludert, hvorav 775 (55 %) var behandlet med botulinumtoksin A. Mellom habiliteringssentrene var det stor variasjon i andelen barn som fikk behandling (38–80 %; p < 0,001). Maksimum dose botulinumtoksin A per behandling per pasient var 200–600 enheter Botox. Fem sentre oppga at de har skriftlige retningslinjer for behandlingsindikasjon. FORTOLKNING Andelen barn med cerebral parese som behandles med botulinumtoksin A varierer betydelig mellom habiliteringssentrene i Norge