J. Fooks et al., A COMPARISON OF 2 METHODS OF FOLLOW-UP IN A TRIAL OF PROPHYLACTIC VOLUME EXPANSION IN PRETERM BABIES, Paediatric and perinatal epidemiology, 12(2), 1998, pp. 199-216
The outcome at age 2 years of preterm babies recruited into a three-ar
m randomised controlled trial of prophylactic volume expansion was asc
ertained in two ways: from a neurodevelopmental assessment performed b
y a paediatrician and from responses on a brief questionnaire complete
d by the child's personal health visitor. Of 776 babies recruited into
the trial, 604 survived to the age of 2 years and the findings of a p
aediatric assessment were available for all survivors. Questionnaires
were sent to the health visitors of 601 of the survivors; 513 (85.4%)
were returned. There was sufficient information on the returned questi
onnaires to categorise 449 of the children as normal, impaired, modera
tely disabled or severely disabled. We were unable to detect a respons
e bias by severity of disability. Agreement on individual questions ra
nged between 86.3% and 98.4%. There was some mismatch in the reporting
of vision (weighted kappa = 0.71) and hearing (weighted kappa = 0.73)
, with differences in perception of level of severity of sensory loss.
Health visitors tended to underestimate the child's functional level
compared with the paediatrician. However, of 56 children classified as
severely disabled by the paediatrician, 48 were classified similarly
and eight as moderately disabled on the basis of the questionnaire. Th
e end point of the trial was death or severe disability at 2 years of
age. There was close similarity in the trial results whether based on
the paediatric assessment or on the questionnaire. Further refinement
of the questionnaire is needed, but this methodology may be useful in
ascertaining the frequency of severe disability in large cohorts of ba
bies.