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Follow up studies: a case for a standard minimum data set

A vast amount of information is collected on the subsequent health and development of babies who are born early or small, as well as about babies who are ill around the time of birth, or who have had a particular treatment or intervention. This information is collected for different reasons and in several different ways. Some data are collected as part of prospectively planned follow up studies, and some in hospital based, follow up, and specialist clinics. Data are also collected routinely by people providing care in the community, including community paediatricians, general practitioners, and health visitors. Although such information is of great potential interest to parents, to providers of obstetric and neonatal care, to those responsible for purchasing care and to the public at large, much of it is inaccessible and never used. This is because there is no central focus for collecting together data on childhood morbidity; the diversity of purposes means there is little agreement on which data should be collected and definitions are not standardised There are also wide local differences in the ways in which data are collated, tabulated, and reported.

Broadly, there are two reasons for following up children. First, an assessment can be done as a continuing service for the children and their families after an acute illness, and this focuses on the health and development of the individual child. This is done to identify the child’s health and other needs, and provide reassurance, advice, and information for parents. The information from the assessment can be fed back to nursing and medical staff who treated the baby, albeit at an anecdotal local level. This type of follow up may be hospital or community based. The information obtained can also form part of a continuing record of the child’s status—for example, on the district …