Children followed with difficulty: how do they differ?

OBJECTIVE: To determine if very low birthweight children followed with ease differ in any perinatal or sociodemographic characteristics, or outcomes, compared with children followed with more difficulty.

METHODOLOGY: Consecutive children of birthweight < 1000 g or with gestational ages < 28 weeks born in 1991 (n = 51) or of birthweight < 1500 g born in 1992 (n = 166) at the Royal Women's Hospital, Melbourne, surviving to 5 years of age, were assessed at 5 years of age, corrected for prematurity. Those who attended on the first mutually agreed appointment without substantial reluctance were considered to have been followed with ease. The remainder were considered to have been followed with difficulty. Outcomes included impairments such as cerebral palsy, blindness, deafness, and low IQ. Children had a disability if they had any of cerebral palsy, blindness, deafness requiring amplification, or an IQ more than 1 SD below the mean.

RESULTS: Of the 217 survivors, 204 (94%) were assessed fully at 5 years of age. Of the 204 children assessed, 153 (75%) were followed with ease, and 51 (25%) with difficulty. Of data available in the perinatal period, significantly fewer children followed with more difficulty came from intact families, and more of their mothers had fewer than 12 years of schooling. More children followed with difficulty had a disability (41% compared with 19%), as they predominantly had lower IQ scores (mean difference in IQ - 12.7, 95% confidence interval - 18.0, - 7.4). The association between difficulty of assessment and both higher rates of disability and lower IQ scores remained after adjustment for significant perinatal and sociodemographic variables.

CONCLUSIONS: Children followed with difficulty can partly be recognized on several sociodemographic characteristics in the perinatal period, and have substantially worse sensorineural outcomes than those followed with ease. In any longitudinal study, the more incomplete the follow up, the lower will be the rate of adverse sensorineural outcome.