Les études recensant les prises en charge éducatives des enfants prématurés à haut risque de séquelles neurosensorielles et cognitives sont rares.

Étudier la prise en charge à 5 ans et entre 5 et 8 ans des enfants nés avant 33 semaines d’aménorrhée (SA).

2 901 enfants nés vivants avant 33 SA et un groupe de référence de 666 enfants nés à 39-40 SA ont été inclus dans neuf régions françaises en 1997. À 5 ans, ils ont eu un examen médical, une évaluation des capacités cognitives par le K-ABC, du comportement et de leur prise en charge par un questionnaire rempli par leurs parents. À 8 ans les données ont été obtenues par un questionnaire postal aux parents.

À 5 ans une prise en charge en centre spécialisé et/ou des soins spécifiques étaient requis pour 41 % des enfants nés entre 24 SA et 28 SA, 32 % des enfants nés entre 24 SA et 32 SA et 15 % de ceux nés à 39-40 SA. Entre 5 et 8 ans les taux de soins spécifiques étaient respectivement de 61 %, 50 % et 36 %. Ces taux étaient bons en cas de déficience motrice et moins bons en cas de difficultés cognitives.

Les soins spécifiques et l’admission en centre spécialisé à 5 ans sont d’autant plus fréquents que l’enfant est plus prématuré. Les soins spécifiques sont encore plus fréquents entre 5 et 8 ans qu’à 5 ans témoignant probablement de l’accentuation du retentissement des difficultés cognitives et/ou comportementales sur les apprentissages scolaires.

The immature brain is highly susceptible to the consequences of very preterm birth with a high rate of long-term neurodisabilities in survivors and high use of specific outpatient services to limit the functional effects of the disabilities. To assess the economic burden for the social and health care system, it is necessary to inventory the community supports and need for special education or rehabilitation used by preterm children. Such studies are few and were done only in extremely low-birthweight or extremely preterm newborns in the United States.

To study the rates of specific outpatient services and special education at 5 years of age and between 5 and 8 years of age in a geographically-defined population of children born very preterm.

2901 liveborn children before 33 weeks’gestation (WG) and one control group of 666 liveborn children at 39-40WG were included in nine regions of France in 1997 corresponding to more than one third of all births. At five years, these children had a medical examination and were evaluated by a psychologist at local centres organised for the study in every region. Cognitive function was assessed by the mental processing composite scale (PMC) of the Kauffmann Assessement Battery for Children test, which is considered to be equivalent to intelligence quotient and behavioral difficulties using the Strength and Difficulties questionnaire completed by the parents. Data for dependence or compensatory aids, i.e. occupational therapy or physical therapy, speech therapy, psychologist or psychiatrist visits, orthoptic therapy, wearing glasses, wearing hearing aid, specific equipment to walk (walker, wheelchair…), orthopaedic treatment or anti-epileptic treatment were collected from parents. At eight years, a postal questionnaire was sent to the parents to collect data on specific outpatient services and special treatments at home and school. Stata software was used (version 9.0). Main outcome measures. Parent Questionnaire for identifying children with chronic conditions and specific health care needs at 5 and 8 years and categorization of developmental neurodisabilities based on examination of children and psychometric evaluation at 5 years.

At 5 years data were obtained for respectively 1817 and 396 children born before 33WG or at 39-40WG, which represent 80% of the very preterm children and 71% of the at term children. At 8 years we obtained data for 63% of the very preterm children and 59% of the at term children. At 5 years, care in a rehabilitation center and/or specific outpatient services were required for 41% of children born between 24 and 28WG, 32% of children born between 24 and 32WG and 15% of those born at 39-40WG. Between 5 and 8 years, these figures were respectively 61%, 50% and 36%. In the very preterm group, rates of specific outpatient services were higher than 80% if the child had a motor and/or a neurosensory deficit. In case of cognitive deficiencies (PMC < 85), rates of specific outpatient services were low at 37% at 5 years and increases at 63% between 5 and 8 years.

Compared to the children born at term, the very preterm children have considerable educational needs, which are inversely related to gestational age at birth and to age of the children at the time of reporting. Despite economic burden, efforts to improve access to services are necessary, in particular in case of cognitive impairment.