Inequity in developmental vulnerability, its determinants and the role of access to early identification and intervention

ABSTRACT BACKGROUND AND AIMS Children who are developmentally vulnerable are those that have significant problems in at least one area of their development. Limited information is available on the prevalence of developmental vulnerability prior to the start of school, whether it has an inequitable distribution and how children are identified and referred to early intervention. This thesis aimed to: 1. Explore challenges in investigating inequity in developmental vulnerability. 2. Assess inequities in the prevalence of developmental vulnerability, associated risk factors and their interactions. 3. Explore factors that influence access to early identification and intervention. METHODS Methods included: a literature review; a theoretical critique; a systematic review of the prevalence of parental concerns on the Parents’ Evaluation of Developmental Status (PEDS) indicating developmental vulnerability and associated risk factors; a prospective birth cohort investigating developmental vulnerability and its early identification; a qualitative study of access to early identification and intervention; and a survey of primary health practitioners. RESULTS Between a quarter to a third of children were developmentally vulnerable as indicated by parental concerns on the PEDS in the systematic review and the original research of this thesis. There was evidence of inequities in developmental vulnerability associated with socioeconomic disadvantage, and culturally and linguistically diverse background (CALD). Children with multiple risk factors at the child, parent, family and neighbourhood level were more likely to be developmentally vulnerable but were less likely to have the PEDS documented at well child checks. Parents from CALD backgrounds, health and early childhood practitioners described barriers to access and quality in early identification and intervention services. CONCLUSION To reduce inequities in developmental vulnerability, differential risk needs to be addressed through early childhood policy that ensures cumulative buffering through universal early interventions with enhanced support for vulnerable populations. Differential knowledge needs to be addressed by ensuring that early childhood development is “everyone’s business”. Differential quality needs to be addressed through training and monitoring of primary health care systems to ensure consistency of practice. Differential access needs to be addressed through integrating primary health and early childhood services

Overall prognosis of preschool autism spectrum disorder diagnoses

Background Autism spectrum disorder is a neurodevelopmental disorder characterised by social communication difficulties, restricted interests and repetitive behaviours. The clinical pathway for children with a diagnosis of autism spectrum disorder is varied, and current research suggests some children may not continue to meet diagnostic criteria over time. Objectives The primary objective of this review was to synthesise the available evidence on the proportion of preschool children who have a diagnosis of autism spectrum disorder at baseline (diagnosed before six years of age) who continue to meet diagnostic criteria at follow‐up one or more years later (up to 19 years of age). Search methods We searched MEDLINE, Embase, PsycINFO, and eight other databases in October 2017 and ran top‐up searches up to July 2021. We also searched reference lists of relevant systematic reviews. Selection criteria Two review authors independently assessed prospective and retrospective follow‐up studies that used the same measure and process within studies to diagnose autism spectrum disorder at baseline and follow‐up. Studies were required to have at least one year of follow‐up and contain at least 10 participants. Participants were all aged less than six years at baseline assessment and followed up before 19 years of age. Data collection and analysis We extracted data on study characteristics and the proportion of children diagnosed with autism spectrum disorder at baseline and follow‐up. We also collected information on change in scores on measures that assess the dimensions of autism spectrum disorder (i.e. social communication and restricted interests and repetitive behaviours). Two review authors independently extracted data on study characteristics and assessed risk of bias using a modified quality in prognosis studies (QUIPS) tool. We conducted a random‐effects meta‐analysis or narrative synthesis, depending on the type of data available. We also conducted prognostic factor analyses to explore factors that may predict diagnostic outcome. Main results In total, 49 studies met our inclusion criteria and 42 of these (11,740 participants) had data that could be extracted. Of the 42 studies, 25 (60%) were conducted in North America, 13 (31%) were conducted in Europe and the UK, and four (10%) in Asia. Most (52%) studies were published before 2014. The mean age of the participants was 3.19 years (range 1.13 to 5.0 years) at baseline and 6.12 years (range 3.0 to 12.14 years) at follow‐up. The mean length of follow‐up was 2.86 years (range 1.0 to 12.41 years). The majority of the children were boys (81%), and just over half (60%) of the studies primarily included participants with intellectual disability (intelligence quotient < 70). The mean sample size was 272 (range 10 to 8564). Sixty‐nine per cent of studies used one diagnostic assessment tool, 24% used two tools and 7% used three or more tools. Diagnosis was decided by a multidisciplinary team in 41% of studies. No data were available for the outcomes of social communication and restricted and repetitive behaviours and interests. Of the 42 studies with available data, we were able to synthesise data from 34 studies (69% of all included studies; n = 11,129) in a meta‐analysis. In summary, 92% (95% confidence interval 89% to 95%) of participants continued to meet diagnostic criteria for autism spectrum disorder from baseline to follow‐up one or more years later; however, the quality of the evidence was judged as low due to study limitations and inconsistency. The majority of the included studies (95%) were rated at high risk of bias. We were unable to explore the outcomes of change in social communication and restricted and repetitive behaviour and interests between baseline and follow‐up as none of the included studies provided separate domain scores at baseline and follow‐up. Details on conflict of interest were reported in 24 studies. Funding support was reported by 30 studies, 12 studies omitted details on funding sources and two studies reported no funding support. Declared funding sources were categorised as government, university or non‐government organisation or charity groups. We considered it unlikely funding sources would have significantly influenced the outcomes, given the nature of prognosis studies. Authors' conclusions Overall, we found that nine out of 10 children who were diagnosed with autism spectrum disorder before six years of age continued to meet diagnostic criteria for autism spectrum disorder a year or more later, however the evidence was uncertain. Confidence in the evidence was rated low using GRADE, due to heterogeneity and risk of bias, and there were few studies that included children diagnosed using a current classification system, such as the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM‐5) or the eleventh revision of the International Classification of Diseases (ICD‐11). Future studies that are well‐designed, prospective and specifically assess prognosis of autism spectrum disorder diagnoses are needed. These studies should also include contemporary diagnostic assessment methods across a broad range of participants and investigate a range of relevant prognostic factors

Ngaramadhi Space: An Integrated, Multisector Model of Care for Students Experiencing Problematic Externalising Behaviour

Introduction: Behavioural and emotional disorders are a significant cause of morbidity for young people aged 10–19 years. School-based health care (SBHC) provides an innovative approach to addressing these issues within Australia. Description: We describe an innovative and integrative SBHC model called Ngaramadhi Space (NS) based at a specialised behavioural school called Yudi Gunyi school (YGS) in metropolitan Sydney, Australia. NS was developed in partnership with the Aboriginal community to provide holistic, integrated, multidisciplinary child and family centred care to students experiencing problematic externalising behaviour. We contextualise the historical factors leading to the development of NS, highlighting the importance of effective partnerships between sectors, and providing the theoretical framework and key components underpinning the model of care. Discussion: In Australia, schools are an under-utilised resource for the delivery of health and support alongside education. Collaboration between sectors can be challenging but allows a more coordinated approach to the management of complex social and health issues. By forming effective partnerships with schools and communities, the health sector has an opportunity to improve access to health and social care in a culturally safe and acceptable way. This is in line with national and international frameworks for improving health service delivery and addressing inequity. Conclusion: The health sector can play a pivotal role in improving the wellbeing of children by forming effective partnerships with schools and communities. The NS model is a practice-based example of this

"Are you available for the next 18 months?" - methods and aims of a longitudinal birth cohort study investigating a universal developmental surveillance program: the ‘Watch Me Grow’ study

BACKGROUND Universal developmental surveillance programs aimed at early identification and targeted early intervention significantly improve short- and long-term outcomes in children at risk of developmental disorders. However, a significant challenge remains in providing sufficiently rigorous research and robust evidence to inform policy and service delivery. This paper describes the methods of the 'Watch Me Grow' study that aims to maximise accurate early detection of children with developmental disorders through a partnership formed between policy makers, service providers and researchers. METHODS/DESIGN A mixed methods study design was developed consisting of: (1) a qualitative study of parents and health service providers to investigate barriers and enablers of developmental surveillance; (2) recruitment of a birth cohort and their longitudinal follow-up to 18 months of age to: a) assess risk factors for not accessing existing developmental surveillance programs and b) estimate the prevalence of children identified with developmental risk; (3) comparison of surveillance outcomes with a reference standard at 18 months of age to assess the diagnostic test accuracy of existing and alternative developmental surveillance tools; and (4) comparison of developmental surveillance models to inform policy recommendations. Data linkage will be used to determine the uptake and representativeness of the study participant group versus non-participants. DISCUSSION The Watch Me Grow study is expected to provide a collaborative opportunity to enhance universal developmental surveillance for early accurate identification of developmental risk. This will also provide quality evidence about identification of developmental risk and access to services to be embedded in existing practice with linkages to policy development.This study (APP 1013690) was funded by the National Health and Medical Research Council of Australia, through a partnership grant with the NSW Kids and Families (NSW Health) and in-kind support from University of New South Wales, La Trobe University, South Western Sydney Local Health District and Sydney Children’s Hospital Network

Predictors of developmental surveillance completion at six months of age in south western Sydney

Background: While developmental surveillance programs promote early identification of child developmental problems, evidence has indicated suboptimal uptake. This study aimed to identify predictors of developmental surveillance completion at 6 months postpartum. Methods: Questionnaires were administered to the parents of 510 infants who were born in south western Sydney, Australia over a 22-month period. Attendance for developmental screening and completion of the Parents' Evaluation of Developmental Status (PEDS) at 6 months postpartum were modelled separately using multivariable logistic regression. Results: Developmental surveillance attendance was predicted by higher levels of maternal education, annual income and being informed about checks. PEDS completion at 6 months of age was predicted by higher income and being informed, as well as being married, employed, speaking English at home, full-term birth and the professional status of the practitioner completing the check. Conclusions: Barriers to developmental surveillance included low socioeconomic status, linguistic diversity and possible gaps in parental knowledge and professional education. Developmental surveillance rates may be increased by the addition of targeted parental and professional support within current universal frameworks

“Dealing with the Hospital has Become too Difficult for Us to Do Alone” – Developing an Integrated Care Program for Children with Medical Complexity (CMC)

Introduction: Children with medical complexity (CMC) require highly specialised care, often from multiple providers and over many years. This paper describes the first 18 months of development of the Kids Guided Personalised Services (GPS) Integrated Care Program (the Program). This Program aims to improve health care experience; communication and to streamline provision of care. Discussion: Key enablers across the Program were put in place and 5 individual project streams were used to implement change. An extensive formative evaluation process was undertaken to truly understand all perspectives in developing the Program. Conclusion/Key Lessons: This Program supports families who are caring for CMC by developing shared care models that bring together local health services with the tertiary hospitals. The methodology used has resulted in comprehensive system change and transformation; reduced presentations to the Emergency Department (ED), avoidable admissions and travel time. A challenge remains in meaningfully engaging primary health care providers

Who is our cohort: Recruitment, representativeness, baseline risk and retention in the "Watch Me Grow" study?

Background: The "Watch Me Grow" (WMG) study examines the current developmental surveillance system in South West Sydney. This paper describes the establishment of the study birth cohort, including the recruitment processes, representativeness, follow-up and participants' baseline risk for future developmental risk. Methods: Newborn infants and their parents were recruited from two public hospital postnatal wards and through child health nurses during the years 2011-2013. Data was obtained through a detailed participant questionnaire and linked with the participant's electronic medical record (EMR). Representativeness was determined by Chi-square analyses of the available clinical, psychosocial and sociodemographic EMR data, comparing the WMG participants to eligible non-participants. Reasons for non-participation were also elicited. Participant characteristics were examined in six, 12, and 18-month follow-ups. Results: The number of infants recruited totalled 2,025, with 50 % of those approached agreeing to participate. Reasons for parents not participating included: lack of interest, being too busy, having plans to relocate, language barriers, participation in other research projects, and privacy concerns. The WMG cohort was broadly representative of the culturally diverse and socially disadvantaged local population from which it was sampled. Of the original 2025 participants enrolled at birth, participants with PEDS outcome data available at follow-up were: 792 (39 %) at six months, 649 (32 %) at 12 months, and 565 (28 %) at 18 months. Participants with greater psychosocial risk were less likely to have follow-up outcome data. Almost 40 % of infants in the baseline cohort were exposed to at least two risk factors known to be associated with developmental risk. Conclusions: The WMG study birth cohort is a valuable resource for health services due to the inclusion of participants from vulnerable populations, despite there being challenges in being able to actively follow-up this populatio

Study protocol for a real-world evaluation of an integrated child and family health hub for migrant and refugee women

Introduction Continuity of child and family healthcare is vital for optimal child health and development for developmentally vulnerable children. Migrant and refugee communities are often at-risk of poor health outcomes, facing barriers to health service attendance including cultural, language, limited health literacy, discrimination and unmet psychosocial needs. 'Integrated health-social care hubs' are physical hubs where health and social services are co-located, with shared referral pathways and care navigation. Aim Our study will evaluate the impact, implementation and cost-benefit of the First 2000 Days Care Connect (FDCC) integrated hub model for pregnant migrant and refugee women and their infants. Materials and methods This study has three components. Component 1 is a non-randomised controlled trial to compare the FDCC model of care with usual care. This trial will allocate eligible women to intervention and control groups based on their proximity to the Hub sites. Outcome measures include: the proportion of children attending child and family health (CFH) nurse services and completing their CFH checks to 12 months of age; improved surveillance of growth and development in children up to 12 months, post partum; improved breastfeeding rates; reduced emergency department presentations; and improved maternal well-being. These will be measured using linked medical record data and surveys. Component 2 will involve a mixed-method implementation evaluation to clarify how and why FDCC was implemented within the sites to inform future roll-out. Component 3 is a within-trial economic evaluation from a healthcare perspective to assess the cost-effectiveness of the Hubs relative to usual care and the implementation costs if Hubs were scaled and replicated

Connecting healthcare with income maximisation services, and their financial, health and well-being impacts for families with young children : a systematic review protocol

Introduction: Poverty has far-reaching and detrimental effects on children’s physical and mental health, across all geographies. Financial advice and income-maximisation services can provide a promising opportunity for shifting the physical and mental health burdens that commonly occur with financial hardship, yet awareness of these services is limited, and referrals are not systematically integrated into existing healthcare service platforms. We aim to map and synthesise evidence on the impact of healthcare-income maximisation models of care for families of children aged 0–5 years in high-income countries on family finances, parent/caregiver(s) or children’s health and well-being. Methods and analysis: To be included in the review, studies must be families (expectant mothers or parents/ caregivers) of children who are aged between 0 and 5 years, accessing a healthcare service, include a referral from healthcare to an income-maximisation service (ie, financial counselling), and examine impacts on child and family health and well-being. A comprehensive electronic search strategy will be used to identify studies written in English, published from inception to January 2021, and indexed in MEDLINE, EMBase, PsycINFO, CINAHL, Proquest, Family & Society Studies Worldwide, Cochrane Library, and Informit Online. Search strategies will include terms for: families, financial hardship and healthcare, in various combinations. Bibliographies of primary studies and review articles meeting the inclusion criteria will be searched manually to identify further eligible studies, and grey literature will also be searched. Data on objective and self-reported outcomes and study quality will be independently extracted by two review authors; any disagreements will be resolved through a third reviewer. The protocol follows the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols. Ethics and dissemination: Ethical approval is not required. The results will be disseminated widely via peer-reviewed publication and presentations at conferences related to this field. PROSPERO registration number CRD42020195985

"Watch Me Grow- Electronic (WMG-E)" surveillance approach to identify and address child development, parental mental health, and psychosocial needs : study protocol

Background: The COVID-19 pandemic and the associated economic recession has increased parental psychosocial stress and mental health challenges. This has adversely impacted child development and wellbeing, particularly for children from priority populations (culturally and linguistically diverse (CALD) and rural/regional communities) who are at an already increased risk of health inequality. The increased mental health and psychosocial needs were compounded by the closure of in-person preventive and health promotion programs resulting in health organisations embracing technology and online services. Watch Me Grow- Electronic (WMG-E) – developmental surveillance platform- exemplifies one such service. WMG-E was developed to monitor child development and guide parents towards more detailed assessments when risk is identified. This Randomised Controlled Trial (RCT) aims to expand WMG-E as a digital navigation tool by also incorporating parents’ mental health and psychosocial needs. Children and families needing additional assessments and supports will be electronically directed to relevant resources in the ‘care-as-usual’ group. In contrast, the intervention group will receive continuity of care, with additional in-person assessment and ‘warm hand over’ by a ‘service navigator’ to ensure their needs are met. Methods: Using an RCT we will determine: (1) parental engagement with developmental surveillance; (2) access to services for those with mental health and social care needs; and (3) uptake of service recommendations. Three hundred parents/carers of children aged 6 months to 3 years (recruited from a culturally diverse, or rural/regional site) will be randomly allocated to the ‘care-as-usual’ or ‘intervention’ group. A mixed methods implementation evaluation will be completed, with semi-structured interviews to ascertain the acceptability, feasibility and impact of the WMG-E platform and service navigator. Conclusions: Using WMG-E is expected to: normalise and de-stigmatise mental health and psychosocial screening; increase parental engagement and service use; and result in the early identification and management of child developmental needs, parental mental health, and family psychosocial needs. If effective, digital solutions such as WMG-E to engage and empower parents alongside a service navigator for vulnerable families needing additional support, will have significant practice and policy implications in the pandemic/post pandemic period. Trial registration: The trial (Protocol No. 1.0, Version 3.1) was registered with ANZCTR (registration number: ACTRN12621000766819) on July 21st, 2021 and reporting of the trial results will be according to recommendations in the CONSORT Statement