Importance of Universal Surveillance
There is increasing evidence that early detection and intervention for developmental disorders has the potential to alter adverse development and provide significant short- and long-term benefits to human capacity. These benefits include increased school retention and reduced unemployment [
1‐
3]. Unfortunately, the majority of developmental difficulties are not detected until children start school [
3]. The Australian National Health and Medical Research Council [
4] and the American Academy of Paediatrics (AAP) [
5] recommend a system of universal developmental surveillance where the risk of significant developmental problems, and the need for further assessment and early intervention, can be identified early. Developmental surveillance is a continuous and cumulative process whereby knowledgeable healthcare professionals identify children who may have developmental problems [
5]. The key components of developmental surveillance include eliciting and attending to parents’ concerns about their child’s development; documenting and maintaining a developmental history; making accurate observations of the child; identifying risk and protective factors; and maintaining an accurate record of findings. It is critical that there is ongoing contact with families and children coupled with anticipatory guidance and promotion of child development within families as well as responding to developmental concerns reported by parents, followed by clinical observation and the use of a validated surveillance tool over multiple time periods [
4,
5].
What is currently known about Universal Surveillance methods?
Reviews of current practice in primary healthcare and anecdotal Australian evidence suggest that there is inconsistency in how developmental surveillance is undertaken in primary healthcare [
6,
7]. Studies have documented the difficulties with approaches to monitoring developmental progress in child health settings [
8], which typically involve parents/carers raising concerns during a consultation, and/or the administration of screening tools. While there are benefits of surveillance, there are also barriers to developmental surveillance achieving its potential positive impact. These include time constraints and difficulties in accessing high quality and affordable primary healthcare for children according to need [
9], and obstacles for children receiving appropriate interventions even when they are recognised as being at risk of developmental delay [
10‐
13]. For example, in Australia there are long waiting periods for both private and public assessment and intervention services for identified developmental problems such as speech and language disorders or global developmental delay [
14]. Moreover, the lack of data regarding the uptake of the developmental surveillance program and service utilisation creates challenges for policy makers, service providers, and clinicians in developing appropriate care pathways; a key issue that the 'Watch Me Grow' (WMG) study seeks to address [
15].
We are not aware of any robust, longitudinal evidence on the uptake of universal developmental surveillance in communities, particularly those with high levels of socioeconomic disadvantage. Additional gaps in existing evidence include the nature of the barriers and enablers to the uptake of developmental surveillance by families and the accuracy of developmental surveillance in identifying children at risk of developmental disorders such as autism spectrum disorder (ASD) [
16,
17] and intellectual disability. Finally, there is scant data regarding models of partnership between policy makers and service providers to meet the challenges in delivering universal or targeted interventions for those at risk.
Developmental Surveillance in New South Wales
In 2007, the New South Wales (NSW) Ministry of Health introduced the Parents’ Evaluation of Developmental Status (PEDS) [
18] for routine administration as a surveillance tool to be completed by child health professionals such as a Child and Family Health Nurse (what we will refer to as a community nurse in this paper) or by general practitioners (GPs). The PEDS is a 10-item standardised parent-report questionnaire that systematically elicits parental concerns regarding their child’s health, development, and behaviour to estimate that child’s developmental risk [
5,
19]. The PEDS has moderate reported sensitivity of 74–80%, and specificity of 70–80% in validation studies from the USA [
20], however to our knowledge no diagnostic test accuracy study has yet been conducted within Australia, notwithstanding a small study examining the PEDS’ capacity to detect symptoms of ASD [
21]. The PEDS is designed for completion by parents/carers of children from birth to 7 years and 11 months of age. It takes about two minutes to administer. Of the ten questions, eight cover expressive and receptive language, fine motor, gross motor, behaviour, socialisation, self-care, and learning while the other two are about more general learning, development, and behaviour. Parents can respond ‘yes’, ‘a little’, or ‘no’. Two or more predictive concerns places a child at high developmental risk; one predictive concern places a child at moderate developmental risk, and one or more non-predictive concerns or no concerns places a child at low or no risk [
22]. In NSW, the Department of Health recommends that children at high and moderate developmental risk are further assessed by a child health professional using a secondary developmental screening tool, the Ages and Stages Questionnaire (ASQ) [
23] and Ages and Stages Questionnaire: Social-Emotional (ASQ:SE) [
24].
In NSW, the PEDS is included in the child’s Personal Health Record (PHR; commonly known as the ‘Blue Book’), which is given to all parents at their child’s birth, and is to be completed at regular check-ups (at 6 months, 12 months, 18 months, 2 years, 3 years and 4 years). In Australia, developmental surveillance varies among states and territories. The PEDS is now the first line developmental surveillance tool used in many states and territories of Australia, including NSW, Victoria, Tasmania, the Australian Capital Territory, Western Australia and urban areas of the Northern Territory. In South Australia, the ASQ is used for developmental surveillance. The ASQ is also used in NSW and Western Australia as the second tier developmental surveillance tool as described above, while in Victoria and the Northern Territory the Brigance Screens [
25] are used to follow-up developmental risk detected by the PEDS. In Queensland, community nurses conduct developmental reviews, but standardised tools are not used. In addition, the Queensland primary care program, which is run by nurses, targets families who are identified as high risk, mainly through the child’s first two years of life.
There are also significant between- and within-state differences with regard to pathways to diagnostic assessment following identification of children at developmental risk. For example, in NSW, the subsequent assessment depends on the pathway developed by areas within local health districts, and can include referral to a paediatrician, GP or a local child development clinic.
In addition to the issues inherent in the choice of tools, procedures and follow-up pathways, there are also significant barriers and enablers relating to health systems and policies as well as in parental behaviours that influence the uptake and participation in surveillance programs. Based on a national survey in the USA, the AAP reported that while most paediatricians agreed that developmental issues should be addressed, they were less confident about their ability to undertake this activity [
26]. This survey identified a number of barriers for health professionals in completing developmental monitoring, including time constraints, inadequate reimbursement, lack of non-physician support staff, lack of further diagnostic and treatment services, insufficient training, and lack of familiarity with assessment tools. In Australia a survey of GPs in central and south western Sydney identified that less than half (44%) use the NSW Blue Book which includes the PEDS to discuss developmental concerns with parents [
27]. At the same time, 60% of GPs who were surveyed reported that there were barriers to families seeking help for their children at risk of developmental disorders. These barriers included waiting times, cost, availability and access to services, and being from a non-English speaking background [
27]. Using a case scenario method in which a developmental paediatrician considered a 2.5-year-old child as needing further follow-up, a study observed that one fifth of GPs responded that they would not initiate further assessment [
27]. In this regard, the uptake of current developmental surveillance methods appears to be poor.
Unfortunately, families with the greatest needs for basic services such as food, housing and healthcare are often the least likely to receive support because of difficulties encountered in accessing these basic services [
28]. These families are also likely to have children with a higher than average risk of having a developmental or behavioural difficulty. Furthermore, the predominant needs of children with developmental or behavioural problems including developmental assessment, speech and language therapy, and support for parents in managing challenging behaviours, are often limited in disadvantaged areas, making it difficult for families to access these services [
29].