Aim: Preterm birth is increasing in prevalence and long-term follow-up studies have documented high rates of neurosensory, intellectual, academic and behavioural disabilities. The importance of early intervention (EI) is well recognised but significant barriers to receiving EI exist in the community. This study explores the association of levels of disability at age 2 years with EI services and social risk in a large cohort of very preterm children. Methods: This was a cohort study of 236 very preterm (gestational age < 30 weeks or birthweight < 1250 g) infants recruited at birth. Children were assessed comprehensively at age 2 years, and EI and social risk data were gathered via parental questionnaire. Disability levels were assigned as none, mild, or moderate to severe. The relationships of disability level to EI services and social risk were determined. Results: Of the initial cohort, data from 227 (97%) were available at age 2 years. Overall, 50.7% (115/227) of children had some disability. A significant difference was present (P < 0.001) between the rates of EI and disability, with only 27.9% of children with a mild disability receiving EI services compared with 51.1% of children with a moderate to severe disability. After adjustment for level of disability, those of higher social risk were less likely to receive EI services (odds ratio 0.25; 95% confidence interval 0.11-0.56; P = 001). Conclusions: Currently available follow-up, referral and EI services underserve the most vulnerable children in our community, those with a combination of biological and social risk factors for developmental disabilities.
BackgroundMost babies are born healthy and grow and develop normally through childhood. There are, however, clearly identifiable high-risk groups of survivors, such as those born preterm or with ill-health, who are destined to have higher than expected rates of health or developmental problems, and for whom more structured and specialised follow-up programs are warranted.DiscussionThis paper presents the results of a two-day workshop held in Melbourne, Australia, to discuss neonatal populations in need of more structured follow-up and why, in addition to how, such a follow-up programme might be structured. Issues discussed included the ages of follow-up, and the personnel and assessment tools that might be required. Challenges for translating results into both clinical practice and research were identified. Further issues covered included information sharing, best practice for families and research gaps.SummaryA substantial minority of high-risk children has long-term medical, developmental and psychological adverse outcomes and will consume extensive health and education services as they grow older. Early intervention to prevent adverse outcomes and the effective integration of services once problems are identified may reduce the prevalence and severity of certain outcomes, and will contribute to an efficient and effective use of health resources. The shared long-term goal for families and professionals is to work toward ensuring that high risk children maximise their potential and become productive and valued members of society.Electronic supplementary materialThe online version of this article (doi:10.1186/1471-2431-14-279) contains supplementary material, which is available to authorized users.
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