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20-year survival of children born with congenital anomalies: a population-based study
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Professor Mark Pearce
Professor Judith Rankin
Tennant PWG, Pearce MS, Bythell M, Rankin J
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Background: Congenital anomalies are a leading cause of perinatal and infant mortality. Advances in care have improved the prognosis for some groups and subtypes, but there remains a paucity of knowledge regarding the survival for many others, especially beyond the first year of life. This study used high-quality data to estimate survival for a range of congenital anomaly groups and subtypes to age 20 years. Method: Information on children with a congenital anomaly, delivered between 1985 and 2003, was obtained from the UK Northern Congenital Abnormality Survey. Local hospital and national tracing systems were used to identify the survival status of 99% of live born children. Survival up to age 20 years was estimated using Kaplan-Meier methods. Cox-proportional hazards regression was used to examine survival influences. Findings: Twenty year survival was 85·5% (95% CI: 84·8-86·3) among children with at least one congenital anomaly; 89·5% (95% CI: 88·4-90·6) for cardiovascular, 79·1% (95% CI: 76·7-81·3) for chromosomal, 93·2% (95% CI: 91·6-94·5) for urinary, 83·2% (95% CI: 79·8-86·0) for digestive system, 97·6% (95% CI: 95·9-98·6) for orofacial clefts, and 66·2% (95% CI: 61·5-70·5) for nervous system anomalies. Survival varied considerably between subtypes. The proportion of terminations for fetal anomaly increased throughout the study period, and, together with year of birth, was an independent predictor of survival. Interpretation: This study presents robust estimates of survival for a range of congenital anomaly groups and subtypes. This information will be valuable for families, health professionals, and for healthcare planning.
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