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Objective: To ascertain the health and school performance of teenagers born before 29 weeks gestation (extremely low gestational age [ELGA]) and to compare those in mainstream school with classroom controls.
Methods: Three geographically defined cohorts of babies born in 1983 and 1984 were traced at the age of 15-16 years. Their health, abilities, and educational performance were ascertained using postal questionnaires to the teenagers themselves, their parents, their general practitioners, and the teachers of those in mainstream school. Identical questionnaires were sent to classroom controls.
Results: Of the 218 teenagers surviving to the age of 16 years, information was obtained on 1 79. Of these, 29 were in special schools and 150 in mainstream school, 10 of whom had severe motor or sensory impairment. Using the Child Health Questionnaire, parents of teenagers in mainstream school reported a higher incidence of problems than controls in physical functioning (difference in mean scores 9.0 (95% confidence interval (CI) 4.9 to 13.1)) and family life (difference in mean scores for family cohesion 7.0 (95% Cl 1 .6 to 12.4)). In all areas of learning, teachers rated the ability of the ELGA teenagers in mainstream school lower than the control group. Parents of teenagers in special schools reported a higher rate of problems in most areas.
Conclusions: One in six ELGA survivors at age 16 years have severe disabilities and are in special schools. Most ELGA survivors are in mainstream school and are coping well as they enter adult life, although some will continue to need additional health, educational, and social services.
It is well known that babies born at extremely low gestational age (ELGA) are at risk of motor and sensory impairment, (1 2) specific learning difficulties at school, (3-7) and behavioural problems. (8-11) Although a number of children with severe motor, sensory, and intellectual difficulty will be in special schools or in special units, most of these preterm survivors are in a mainstream school. Little is known, however, of how these children fare in later school years and as they approach school leaving. It is not known how motor and sensory deficits, growth delay, or other physical impairments may evolve and influence the adolescents' views of their overall level of health and abilities, and how they will function in the adult world.
In 1983-1984, three cohorts of babies born before 29 weeks gestation in three different parts of the United Kingdom were identified, and the survivors were followed up at different ages. (7 9 12-15) The total number of liveborn babies in the three cohorts was 535, and 218 were thought to be alive at the age of 16 years. It was decided to develop a collaborative study to ascertain their outcome compared with a group of peers, as they reached the end of their years at school and embarked on adulthood. Information on the outcome of cohorts, defined by gestational age at birth rather than birth weight, is needed by obstetricians and parents to make informed decisions before and around the time of birth. The collaboration provided relatively large numbers, making it possible to get more precise estimates of the risks of later adverse outcomes in this group of children than would have been possible with a study based on a single area.
We were particularly concerned to get an overall picture of how the surviving teenagers fare in every day life, how they view themselves, and how their health and abilities are perceived by parents and teachers. Drawing on detailed standardised instruments, we developed a series of questionnaires to be completed by the teenagers, their parents, general practitioners, and teachers. In this paper, we describe the whole cohort in these terms. We also wished to compare the outcome of this group with a control group of teenagers of higher gestational age. As it is not possible to select appropriate controls for children in special schools, we have confined the comparison to children who are in mainstream school. We hypothesised that there is a higher rate of continuing health problems, both physical and psychological, and low educational performance among 15-16 year old children in mainstream school who were born before 29 weeks of gestation compared with classroom controls of higher gestational age.
The original three cohorts were all defined by maternal residence at the time of birth. They were all babies born before 29 weeks gestation in 1983 in the former Northern Region and in 1984 in Scotland and in the former Oxford Region. Gestational age had been checked at the time of assembly of the cohorts using a combination of menstrual dates and ultrasound before 20 weeks when available. The scan date was preferred if the menstrual date was uncertain and if there was a discrepancy of more than 14 days between the menstrual date and scan estimate. Three local coordinators ran this project, one in Newcastle, one in Glasgow, and one in Oxford who had overall coordinating responsibility.
Surviving children in the three cohorts had been reassessed at different ages in preschool and early school years. The name and address of the child's general practitioner at the time of the most recent assessment was traced, and a letter sent asking if the child was still registered with the practice. If so, the general practitioner was asked if it was thought appropriate for the family to be approached. If the child was no longer registered with that general practitioner, the NHS Central Register was asked to confirm that the child was still alive, and, if so, to provide the location of the child's current general practitioner.
Once located, and with the general practitioner's permission, the research coordinator for that area contacted the family by letter. Written permission was requested from both the parents and teenagers to send a questionnaire to each of them and to the teenager's teacher and general practitioner. This initial contact differed in the three areas. In the Northern region, the initial letter was followed by a telephone call requesting a visit to the teenager's home as part of the protocol for another study. The visit was planned to take place after the questionnaires had been completed. In the Oxford area, the initial letter was addressed to the parents asking them to pass a consent form to their teenager. In Scotland, to conform with Scots law, the initial letter was sent directly to the teenager asking for permission to approach firstly their parents and then their teacher and general practitioner.
If the parents and teenager gave their permission for the school to be approached, a letter was sent to the head teacher enclosing a questionnaire for the year tutor of the teenager. The head teacher was also asked to help to identify controls by letting us have the names and addresses of three teenagers in the same year group matched by sex and nearest in birth date to the ELGA teenager. As we aimed to have one control for each ELGA teenager, initially we approached the first of the control families. If the family did not respond or did not wish to participate, we then approached the second, and if necessary the third. This proved to be a slow process, and, in addition, some schools were reluctant to release names and addresses of possible control families. Early in the study therefore we decided to ask the head teacher to give the letters directly to up to three control teenagers. There was a variable level of compliance both within the schools and the families, and we have no knowledge of the characteristi cs of the potential controls who failed to respond. Finally, a questionnaire was sent to the general practitioner of both the ELGA teenagers and the controls, provided that they had given consent.
In two of the three geographic areas of the study, questionnaires from all respondents were returned to the local coordinators. Two reminders were sent to non-responders, and telephone contact was made where that was possible; missing data from returned questionnaires were followed up in the same way. In the Northern region, the questionnaires completed by parents and teenagers were retrieved at the time of a visit to the family by a developmental paediatrician. All completed questionnaires were sent to the coordinating office in Oxford.
The project was approved by the Oxford multi-centre research ethics committee and by the local ethics committees in each area.
There were three questionnaires concerning all the teenagers in the study, which were completed by the teenager, parent, and general practitioner. In addition, questionnaires were sent to the teachers of teenagers in mainstream school, asking them to compare their school performance with others in the same class. Questionnaires are available on request.
The teenager questionnaire included questions about family structure and relationships, and items from the Health Education Authority questionnaire on health and perceptions of fitness, exercise, smoking, and drug use. (16) Further questions were asked about onset of puberty, attitudes to school, bullying, and aspirations for the future.
The parent questionnaire included questions on the parents' work situation and educational status. Social class was based on male partner's occupation or, if this was not available, on the mother's occupation. (17) Parents' views of their teenager's health and daily activities, and the impact of their teenager's health and behaviour on themselves and the family were explored using questions from the child health questionnaire. (18) The responses to the questions can be summarised in standardised scores (maximum score = tOO; high scores represent "better" health) for global health, physical functioning, limitations because of physical health, time impact on parent, overall family …