G181 PARENTS' AND SELF REPORTED PERCEPTION OF HEALTH AMONG TEENAGERS IN MAINSTREAM SCHOOL BORN AT EXTREMELY LOW GESTATIONAL AGE (ELGA) AND CLASSROOM CONTROLS
A. Johnson, U. Wariyar, L. Mutch, F. Gardner, U. Bowler, P. Yudkin, C. Hockley, S. Petrou, on behalf of ELGA Steering Group. National Perinatal Epidemiology Unir, University of Oxford, UK
Aims: To compare health status and health related quality of life of teenagers in mainstream school born before 29 weeks of gestation and classroom controls
Methods: Of 218 survivors from three regional cohorts (Scotland, former Northern and Oxford regions) born in 1983-84, 174 (80%) were traced and assessed at age 15-16 years. Using the eight attributes of the Health Utilities Index Mark 3, vision, hearing, speech, emotion, pain, ambulation, hand use and cognition, the health status and derived utility score of the 145 teenagers in mainstream school and 107 classroom controls were measured using questionnaires to both parents and the teenagers themselves
Results: Parents reported two or more attributes affected in 30.8% index children compared with 18.2% controls (difference 12.6; 95%CI 1.9-23.3). On self report two or more attributes were affected in 42.8% of index teenagers and 37.4% of controls (difference 5.4; 95%CI -6.8--17.6). Based on health states reported by parents, a utility score of [less than]0.75 [1.00 = 'perfect health' and 0 'dead'] was derived for 25.7% of index teenagers compared with 8.2% of controls (difference 17.6, 95% CI 8.5-26.6). Based on self report, 19.6% of index teenagers and 11.2% of controls had a utility score of [less than]0.75 (difference 8.4, 95%CI -0.6-17.3).
Conclusions: Health related problems persist into adolescence in extremely preterm survivors who are in mainstream school. There are differences in proxy reports of health status by parents and the views of teenagers themselves.
G182 EXPERIENCES OF PARENTS WITH LIFE-LIMITED CHILDREN: A OUALITATIVE STUDY
E. Horak. Keech Cottage Children's Hospice, UK
Background: Life-limiting conditions other than cancer impose a huge, long-term burden on the family of the affected child. These conditions usually require long term care, with the expectancy of sure but delayed fatal outcome. Although increasing attention is being focused on the psychosocial issues of families of children dying of cancer, few studies explore the problems of parents with children dying from nonmalignant but severely disabling life-limiting conditions.
Aims: The study intends to explore the experiences and needs of families with children having life limiting illnesses. It attempts to identify parents' problems, to match care and …