Long term follow up of high risk children: who, why and how?

Doyle et al. BMC Pediatrics 2014, 14:279 http://www.biomedcentral.com/1471-2431/14/279 COMMENTARY Open Access Long term follow up of high risk children: who, why and how? Lex W Doyle1,2,3,4,19*, Peter J Anderson2,3,4, Malcolm Battin5, Jennifer R Bowen6, Nisha Brown1,2,7, Catherine Callanan4, Catherine Campbell10, Samantha Chandler19, Jeanie Cheong1,3,4, Brian Darlow8, Peter G Davis1,4, Tony DePaoli9, Noel French10, Andy McPhee11, Shusannah Morris19, Michael O’Callaghan12, Ingrid Rieger13,14, Gehan Roberts2,3,15, Alicia J Spittle3,16, Dieter Wolke17 and Lianne J Woodward18 Abstract Background: Most 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. Discussion: This 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. Summary: A 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. Keywords: Infant, Low birth weight, Preterm, High-risk, Follow-up, Cognition, Development, Growth Background There are now approximately 300,000 babies born every year in Australia, most of who survive the newborn period, and then grow and develop normally. However, clearly identifiable groups of survivors, such as those born preterm or with ill-health, have adverse long-term outcomes, with higher than expected rates of health or developmental problems, compared with children born at term and in good health. Usual health surveillance for the majority of children comprises regular visits to a Maternal and Child Health * Correspondence: 1 Department of Obstetrics and Gynaecology, The University of Melbourne, Melbourne, Victoria, Australia 2 Department of Paediatrics, The University of Melbourne, Melbourne, Victoria, Australia Full list of author information is available at the end of the article Nurse (or equivalent), or to a primary care doctor for checks on the child’s health, growth and development, and to organise immunisations. Follow-up rates for these services are high during infancy and steadily fall during the preschool years. Those who are at higher risk are worthy of a more structured and specialised programme of follow-up assessments, for at least two reasons. First, families want to know if their child is healthy and growing and developing normally, or if health or other problems are likely to be encountered in the future. Special concerns often arise at transition points, such as entering child care or changing school levels, thus requiring careful guidance and advice. Second, some problems can be ameliorated or prevented if detected early – identification of high-risk groups for targeted intervention can be both effective and efficient. © 2014 Doyle et al.; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly credited. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Doyle et al. BMC Pediatrics 2014, 14:279 http://www.biomedcentral.com/1471-2431/14/279 The number of studies reporting long-term outcomes of high-risk children is rapidly increasing. However, the methods of these follow-up studies vary widely, with sources of variability including inclusion criteria, timing of assessments, outcome measures and use of appropriate control groups. As a result, it is difficult to compare the results of published studies, or to aggregate the data to provide more certainty around the rates of some important outcomes. Outcome statistics are needed for counseling families as well as to guide practitioners who follow high risk groups to know what outcomes can be expected and at what ages specific problems may emerge. This information can also be linked to evidence-based pathways to assist families to access management resources. While it is widely accepted that high-risk infants need close monitoring and surveillance, a framework for this practice has only infrequently been developed; for example in one instance for a selected group of infants over the first 5 years of life [1]. In addition to being useful for informing clinical follow-up programs, a framework could also assist longitudinal research with high-risk infants and help to improve uniformity of follow-up time-points and measures. The aim of this report is to provide a framework for identifying which children need specialised follow-up, what outcomes should or could be of interest, in addition to how, where and when follow-up should be conducted. Page 2 of 15  Low birth weight (LBW; birth weight <2500 g);          higher risk – very low birth weight (VLBW; <1500 g); highest risk – extremely low birth weight (ELBW; <1000 g). Small for gestational age (SGA – <3rd percentile or < −2 SD weight for gestational age and sex) infants are also at higher risk, but would also usually fall into one of the LBW categories. Neonatal encephalopathy (including seizures), regardless of cause Term babies who have received positive pressure ventilation for >24 hours Congenital brain or heart malformations, genetic syndromes or inborn errors of metabolism that affect neurodevelopmental outcomes Failed newborn hearing screening Neonatal central nervous system infections – meningitis/encephalitis Infants requiring major surgery (e.g., brain, cardiac, other thoracic or abdominal) Hyperbilirubinaemia (bilirubin >400 μmol/l or clinical evidence of bilirubin encephalopathy) Neurobehavioural abnormalities noted in the newborn peri (...truncated)