Public health indicators for cerebral palsy: A European collaborative study of the Surveillance of Cerebral Palsy in Europe network.

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.

Prevalence and characteristics of children with cerebral palsy according to socioeconomic status of areas of residence in a French department.

AIM: To study the association between the socioeconomic environment of area of residence and prevalence and characteristics of children with cerebral palsy (CP). METHOD: Data on 8-year-old children with CP born in 2000-2011 (n = 252) were extracted from a regional population-based register in France. The European Deprivation Index (EDI), available at census block level, characterised socioeconomic deprivation in the child's area of residence at age of registration. The prevalence of CP was estimated in each group of census units defined by EDI distribution tertiles in the general population. The association between deprivation level and CP severity was assessed according to term/preterm status. RESULTS: CP prevalence differed between deprivation risk groups showing a J-shaped form with the prevalence in the most deprived tertile (T3) being the highest but not significantly different of the prevalence in the least deprived one (T1). However, the prevalence in the medium deprivation tertile (T2) was significantly lower than that in the most deprived one with a prevalence risk ratio (PRR) of: PRRT2/T3 = 0.63 95% CI [0.44-0.89]). Prevalences of CP with associated intellectual disability (ID) and CP with inability to walk were significantly higher in the most deprived tertile compared to the least deprived one (respectively PRRT3/T1 = 1.86 95% CI [1.19-2.92] and PRRT3/T1 = 1.90 95% CI [1.07-3.37]). Compared to children living in the least deprived areas, children with CP born preterm living in the most deprived areas had more severe forms of motor impairment, such as an inability to walk or a combination of an inability to walk and moderate to severe impairment of bimanual function. They also had more associated intellectual disability. No associations were observed among term-born children. INTERPRETATION: A significant association between area deprivation group and CP severity was observed among preterm children but not among term-born children.

Trends in Prevalence and Severity of Pre/Perinatal Cerebral Palsy Among Children Born Preterm From 2004 to 2010: A SCPE Collaboration Study.

Aim: To report on prevalence of cerebral palsy (CP), severity rates, and types of brain lesions in children born preterm 2004 to 2010 by gestational age groups. Methods: Data from 12 population-based registries of the Surveillance of Cerebral Palsy in Europe network were used. Children with CP were eligible if they were born preterm (<37 weeks of gestational age) between 2004 and 2010, and were at least 4 years at time of registration. Severity was assessed using the impairment index. The findings of postnatal brain imaging were classified according to the predominant pathogenic pattern. Prevalences were estimated per 1,000 live births with exact 95% confidence intervals within each stratum of gestational age: ≤27, 28-31, 32-36 weeks. Time trends of both overall prevalence and prevalence of severe CP were investigated using multilevel negative binomial regression models. Results: The sample comprised 2,273 children. 25.8% were born from multiple pregnancies. About 2-thirds had a bilateral spastic CP. 43.5% of children born ≤27 weeks had a high impairment index compared to 37.0 and 38.5% in the two other groups. Overall prevalence significantly decreased (incidence rate ratio per year: 0.96 [0.92-1.00[) in children born 32-36 weeks. We showed a decrease until 2009 for children born 28-31 weeks but an increase in 2010 again, and a steady prevalence (incidence rate ratio per year = 0.97 [0.92-1.02] for those born ≤27 weeks. The prevalence of the most severely affected children with CP revealed a similar but not significant trend to the overall prevalence in the corresponding GA groups. Predominant white matter injuries were more frequent in children born <32 weeks: 81.5% (≤27 weeks) and 86.4% (28-31 weeks), compared to 63.6% for children born 32-36 weeks. Conclusion: Prevalence of CP in preterm born children continues to decrease in Europe excepting the extremely immature children, with the most severely affected children showing a similar trend.

Prevalence and characteristics of autism spectrum disorders in children with cerebral palsy.

AIM: To evaluate the prevalence of co-occurring autism spectrum disorders (ASDs) among children with cerebral palsy (CP), and to describe their characteristics. METHOD: The data of 1225 CP cases from four population-based registers (Iceland, Sweden, and two in France) and one population-based surveillance programme (North East England, UK) participating in the Surveillance of Cerebral Palsy in Europe Network (SCPE) were analysed. The ASD diagnoses were systematically recorded using category F84 of the International Classification of Diseases, 10th Revision. The registers provided data on children born between 1995 and 2006, while the cross-sectional survey in the UK concerned children aged 0 to 19 years, registered in 2010. RESULTS: Among the children with CP, 107 had an associated diagnosis of ASD - i.e., 8.7% of the study population (95% confidence interval 7.2-10.5). This proportion varied across centres from 4.0% to 16.7% but was independent of CP prevalence. Male sex, co-occurring epilepsy, intellectual disability, and better walking ability were associated with the coexistence of ASD. INTERPRETATION: Our findings support the need for a multidisciplinary approach to management of children with CP to adequately identify and address all facets of presentation, including ASD.

Socioeconomic Disparities and Prevalence of Autism Spectrum Disorders and Intellectual Disability.

BACKGROUND AND OBJECTIVES: Study of the impact of socioeconomic status on autism spectrum disorders (ASD) and severe intellectual disabilities (ID) has yielded conflicting results. Recent European studies suggested that, unlike reports from the United States, low socioeconomic status is associated with an increased risk of ASD. For intellectual disabilities, the links with socioeconomic status vary according to the severity. We wished to clarify the links between socioeconomic status and the prevalence of ASD (with or without ID) and isolated severe ID. METHODS: 500 children with ASD and 245 children with severe ID (IQ <50) aged 8 years, born 1995 to 2004, were recruited from a French population-based registry. Inclusions were based on clinical diagnoses reported in medical records according to the International Classification of Diseases, 10th Revision. Socioeconomic status was measured by indicators available at block census level which characterize the population of the child's area of residence. Measures of deprivation, employment, occupation, education, immigration and family structure were used. Prevalences were compared between groups of census units defined by the tertiles of socioeconomic level in the general population. RESULTS: Prevalence of ASD with associated ID was higher in areas with the highest level of deprivation and the highest percentage of unemployed adults, persons with no diploma, immigrants and single-parent families. No association was found when using occupational class. Regarding ASD without associated ID, a higher prevalence was found in areas with the highest percentage of immigrants. No association was found for other socioeconomic indicators. The prevalence of isolated severe ID was likely to be higher in the most disadvantaged groups defined by all indicators. CONCLUSION: The prevalence of ASD with associated ID and of severe isolated ID is more likely to be higher in areas with the highest level of deprivation.

Trends in prevalence and characteristics of post-neonatal cerebral palsy cases: a European registry-based study.

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

[Fertility preservation in adolescent cancer patients]. / La fertilité des adolescents atteints d'un cancer.

Recent advances in cancer therapy have improved the survival rate of infant and adolescent facing cancers. The objective of treatment is not only to cure cancer but also to limit its secondary consequences. Impaired fertility is an important sequel of numerous treatments against cancer. Therefore, efforts to maintain fertility must be a major consideration in the treatment plan. This review focuses on various options for preserving fertility in adolescents. In female patients, ovarian transposition out of the radiation field may considerably reduce the radiation received by the ovaries. The benefits of GnRH analogue are not yet clear and apoptosis inhibiting agents are unavailable. Embryo freezing is the most reliable method to preserve fertility. This method is time-intensive, requires a partner, and ovarian stimulation may not always be compatible with the need of starting treatment against cancer immediately. Oocyte cryopreservation is an experimental technique that can be used in post-pubertal patients irrespective of their marital status. The cryopreservation of mature oocytes has similar constrains as embryo freezing ; in addition the technique is not as well-established and the pregnancy rates obtained are much lower than those achieved with embryos. Freezing of immature oocytes followed by in vitro maturation in spite of its theoretical advantages is inefficient in current practice. Ovarian tissue cryopreservation offers great hope because it has the potential to preserve a large number of primordial follicles without any ovarian stimulation and preliminary trials have shown some success. For male adolescents cancer patients semen cryopreservation is a successful alternative that should be offered systematically when cancer therapies that may impair gonadal function are indicated. For prepubertal males there is presently no standardized technique for preserving fertility ; however, the development of testicular germ-cell harvest needs to be considered.