Comprehensive care programmes for children with medical complexity.

BACKGROUND: Children with medical complexity (CMC) represent a small, but growing, proportion of all children. Regardless of their underlying diagnosis, by definition, all CMC have similar functional limitations and high healthcare needs. It has been suggested that improving aspects of healthcare delivery for CMC improves health- and quality of life-related outcomes for children and their families and reduces healthcare-related expenditure. As a result, dedicated comprehensive care programmes have been established at many hospitals to meet the needs of CMC; however, it is unclear if such programmes are effective. OBJECTIVES: Our main objective was to assess the effectiveness of comprehensive care programmes that aim to improve care coordination and other aspects of health care for CMC and to assess whether the effectiveness of such programmes differs according to the programme setting and structure. We aimed to assess their effectiveness in relation to child and parent health, functioning, and quality of life, quality of care, number of healthcare encounters, unmet healthcare needs, and total healthcare-related costs. SEARCH METHODS: We searched CENTRAL, MEDLINE, Embase, and CINAHL in May 2023. We also searched reference lists, trial registries, and the grey literature. SELECTION CRITERIA: Randomised and non-randomised trials, controlled before-after studies, and interrupted time series studies were included. Studies that compared enrolment in a comprehensive care programme with non-enrolment in such a programme/treatment as usual were included. Participants were children that met the criteria for the definition of CMC, which is: having (i) a chronic condition, (ii) functional limitations, (iii) increased health and other service needs, and (iv) increased healthcare costs. Studies that included the following types of outcomes were included: health; quality of care; utilisation, coverage and access; resource use and costs; equity; and adverse outcomes. DATA COLLECTION AND ANALYSIS: Two review authors independently extracted data, assessed the risk of bias in each included study, and evaluated the certainty of evidence according to GRADE criteria. Where possible, data were represented in forest plots and pooled. We were unable to undertake a meta-analysis for comparisons and outcomes, so we used a structured synthesis approach. MAIN RESULTS: We included four studies with a total of 912 CMC as participants. All included studies were randomised controlled trials conducted in hospitals in the USA or Canada. Participants varied across the included studies; however, all four studies included children with complex and chronic illness and high healthcare needs. While the primary aim of the intervention was similar across all four studies, the components of the interventions differed: in the four studies, the intervention involved some element of care coordination; in two of the studies, it involved the child receiving care from a multidisciplinary team, while in one study, the intervention was primarily centred on access to an advanced practice nurse care coordinator and another study involved nurse a practitioner-paediatrician dyad partnering with families. The risk of bias in the four studies varied across domains, with issues primarily relating to the lack of blinding of participants, personnel, and outcome assessors, inadequate allocation concealment, and incomplete outcome data. Comprehensive care for CMC compared to usual care may make little to no difference to child health, functioning, and quality of life at 12 or 24 months (three studies with 404 participants) and we assessed the evidence for the outcomes in this category (child health-related quality of life and functional status) as being of low certainty. For CMC, comprehensive care probably makes little or no difference to parent health, functioning, and quality of life compared to usual care at 12 months (one study with 117 participants) and we assessed the evidence for this outcome as being of moderate certainty. Comprehensive care for CMC compared to usual care may slightly improve child and family satisfaction with, and perceptions of, care and service delivery at 12 months (three studies with 453 participants); however, we assessed the evidence for these outcomes as being of low certainty. For CMC, comprehensive care probably makes little or no difference to the number of healthcare encounters (emergency department visits) and the number of hospitalised days (hospital admissions) compared to usual care at 12 months (three studies with 668 participants), and we assessed the evidence for these outcomes as being of moderate certainty. Three of the included studies (668 participants) reported cost outcomes and had conflicting results, with one study reporting significantly lower healthcare costs at 12 months in the intervention group compared to the control group, one reporting no differences between groups, and the other study reporting a greater increase in total healthcare costs in the intervention group compared to the control group. Overall, comprehensive care may make little or no difference to overall healthcare costs in CMC; however, the methods used to measure total healthcare costs varied across studies and the certainty of the evidence relating to this outcome is low. No studies assessed the costs to the family. AUTHORS' CONCLUSIONS: The findings of this review should be treated with caution due to the limited amount and quality of the published research that was available to be included. Overall, the certainty of the evidence for the effectiveness of comprehensive care for CMC ranged from low to moderate across outcomes and there is currently insufficient evidence on which to draw strong conclusions. There is a need for more high-quality randomised trials with consistency of the target population and intervention components, methods of reporting outcomes, and follow-up periods, as well as full cost analyses, taking into account both costs to the family and costs to the healthcare system.

'All Aboriginal and Torres Strait Islander children should have access to the ASQ-TRAK': Shared vision of an implementation support model for the ASQ-TRAK developmental screener.

ISSUE ADDRESSED: The ASQ-TRAK, a strengths-based approach to developmental screening, has high acceptability and utility across varied Aboriginal and Torres Strait Islander contexts. While substantive knowledge translation has seen many services utilise ASQ-TRAK, we now need to move beyond distribution and support evidence-based scale-up to ensure access. Through a co-design approach, we aimed to (1) understand community partners' perspectives of barriers and enablers to ASQ-TRAK implementation and (2) develop an ASQ-TRAK implementation support model to inform scale-up. METHODS: The co-design process had four phases: (i) partnership development with five community partners (two Aboriginal Community Controlled Organisations); (ii) workshop planning and recruitment; (iii) co-design workshops; and (iv) analysis, draft model and feedback workshops. RESULTS: Seven co-design meetings and two feedback workshops with 41 stakeholders (17 were Aboriginal and Torres Strait Islander), identified seven key barriers and enablers, and a shared vision - all Aboriginal and Torres Strait Islander children and their families have access to the ASQ-TRAK. Implementation support model components agreed on were: (i) ASQ-TRAK training, (ii) ASQ-TRAK support, (iii) local implementation support, (iv) engagement and communications, (v) continuous quality improvement and (vi) coordination and partnerships. CONCLUSIONS: This implementation support model can inform ongoing processes necessary for sustainable ASQ-TRAK implementation nationally. This will transform the way services provide developmental care to Aboriginal and Torres Strait Islander children, ensuring access to high quality, culturally safe developmental care. SO WHAT?: Well-implemented developmental screening leads to more Aboriginal and Torres Strait Islander children receiving timely early childhood intervention services, improving developmental trajectories and optimising long-term health and wellbeing.

"It's gotta be done right way": a qualitative study exploring the acceptability of a proposed longitudinal cohort study of young Aboriginal children in Alice Springs.

There is a need for quality longitudinal data on the health and well-being of young Aboriginal and Torres Strait Islander children (hereafter Aboriginal) in Alice Springs that can be used for research, planning and evaluation. The primary aim of this descriptive qualitative study was to determine whether or not a proposed cohort study would be acceptable to the local community. The proposed cohort study will prospectively examine various factors, events and exposures in early life that give Aboriginal children the best chance to grow up strong and lead a healthy happy life. Decisions on specific priority issues to be addressed and study procedures will be determined by local Aboriginal researchers and community members during a future co-design phase. 27 semi-structured interviews and 3 focus group discussions (FGD) were conducted with a range of community stakeholders and parents/caregivers of young Aboriginal children from Alice Springs in the Northern Territory (NT) of Australia. Audio recorded data were transcribed and imported into NVivo12 qualitative software for reflexive thematic analysis. Three major themes concerning acceptability of the concept were constructed from the analysis: (1) Have to be mindful, (2) Duplication of data, and (3) "It's gotta be done right way". There was general support for the concept, however, many participants felt that a cautious and slow approach was necessary. Recommendations included focusing on building trust, taking it slow, and ensuring the study is conducted by local Aboriginal researchers. Barriers to feasibility noted included the high mobility of families, competing demands, and privacy concerns. Findings from this qualitative study support the feasibility and acceptability of a future cohort study of young Aboriginal children in Alice Springs. Leadership from respected local Aboriginal researchers and key stakeholders will be critical to its success.

A rapid review of implementation frameworks underpinning Aboriginal and Torres Strait Islander children's health and social care programs.

OBJECTIVE: This rapid review aimed to identify (1) key frameworks and components underpinning the effective implementation of Health and Social Care (HSC) programs for Aboriginal and Torres Strait Islander children; and (2) participatory and co-design frameworks guiding the implementation. METHODS: Four databases were searched for peer-reviewed English-language articles published between 2015 and 2021. The focus was on HSC models, frameworks, projects or services with an implementation focus for Aboriginal and Torres Strait Islander children aged 0-12 years. RESULTS: Seven studies identifying components supporting effective implementation of Aboriginal and Torres Strait Islander HSC programs were included. Continuous Quality Improvement was the most widely applied approach. Most studies described participatory and co-design approaches to ensure suitability for Aboriginal and Torres Strait Islander children and families. CONCLUSIONS: There remains a paucity of evidence on the effective implementation of Aboriginal and Torres Strait Islander children's HSC programs. Implementation approaches that foster cultural safety and Aboriginal and Torres Strait Islander leadership, support diverse partnerships and promote localised application may facilitate the effective implementation of HSC programs. IMPLICATIONS FOR PUBLIC HEALTH: Future research in this area would benefit from greater consideration of appropriate implementation frameworks and co-design approaches, and emphasis on reporting interventions, implementation frameworks and co-design approaches for HSC programs for Aboriginal and Torres Strait Islander children.

Trusting relationships and learning together: A rapid review of Indigenous reference groups in Australian Indigenous health research.

OBJECTIVE: This rapid review aims to identify how Indigenous research governance is conceptualised, implemented and documented within Australian Indigenous health research studies. METHODS: We searched for peer-reviewed English-language articles in two databases and for web-based grey literature published from database inception to November 2021. Reference lists were searched to identify additional articles. Data relating to research governance were extracted and analysed thematically. RESULTS: A total of 1120 records were screened, and 27 articles were included. Most articles providing detailed description of Indigenous research governance activities were qualitative studies (n=15, 55.6%). Key themes included members are experts; respectful relationships; flexibility; and key logistic considerations (nuts 'n' bolts). CONCLUSIONS: Although Indigenous research governance is recognised as an essential part of ethical research, activities and contributions made by Indigenous reference group (IRG) members are underreported. This important work needs greater visibility in the published literature to share best practice in Indigenous research governance that foregrounds Indigenous expert knowledge, perspectives, and experiences. IMPLICATIONS FOR PUBLIC HEALTH: The study provides a synthesis of factors to consider when establishing and facilitating an IRG for research with Indigenous communities. This has implications for researchers who can adapt and apply the findings to their practice.

Uptake of the culturally appropriate ASQ-TRAK developmental screening tool in the Australian Aboriginal and Torres Strait Islander context.

BACKGROUND: Recently in Australia, access to culturally safe developmental practices for Aboriginal and Torres Strait Islander families has been enhanced by the availability of a culturally appropriate developmental screening tool, the Ages and Stages Questionnaire - Talking about Raising Aboriginal Kids (ASQ-TRAK). This paper aims (i) to describe the uptake of the ASQ-TRAK developmental screening tool in Aboriginal Community Controlled Organizations and mainstream services in Australia and (ii) to explore the extent to which organizations using the ASQ-TRAK have engaged training for staff. METHODS: A retrospective review of ASQ-TRAK sales and training records from January 2015 to May 2020 to determine the ASQ-TRAK distribution by jurisdiction and service type and the number of services that have engaged training. RESULTS: Five hundred ASQ-TRAK kits have been distributed across 77 agencies. Of those, 100 kits (20%) have been purchased by Aboriginal Community Controlled Organizations. Most have been distributed in the Northern Territory (NT) (178, 36%), Western Australia (165, 33%) and South Australia (64, 13%). Of the 15 ASQ-TRAK training workshops, nine have been in the NT. Of the 196 practitioners trained, 25 were identified as facilitators for their organization. CONCLUSION: Despite substantive research translation across Australia, with evidence of its acceptability in different contexts, most Aboriginal Community Controlled Organizations have not yet accessed the ASQ-TRAK, and most organizations have not participated in training. There is an imperative to progress knowledge translation to improve quality and accessibility of culturally appropriate developmental care. Adequately resourced ASQ-TRAK implementation support is needed to ensure sustainable implementation at scale.

Multicountry review: developmental surveillance, assessment and care by outpatient paediatricians.

BACKGROUND: Care of young children with neurodevelopmental disorders (NDD) is a major component of paediatric outpatient practice. However, cross-country practice reviews to date have been limited, and available data demonstrate missed opportunities for early identification, particularly in vulnerable population subgroups. METHODS: Multicountry review of national paediatric body guidance related to developmental surveillance, early identification and early childhood intervention together with review of outpatient paediatrician practices for developmental assessment of children aged 0-5 years with/at risk of NDDs. Review included five countries with comparable nationalised universal child healthcare systems (ie, Australia, Canada, New Zealand, Sweden and the UK). Data were collected using a combination of published and grey literature review, supplemented by additional local sources with descriptive review of relevant data points. RESULTS: Countries had broadly similar systems for early identification of young children with NDDs alongside universal child health surveillance. However, variation existed in national paediatric guidance, paediatric developmental training and practice, including variable roles of paediatricians in developmental surveillance at primary care level. Data on coverage of developmental surveillance, content and quality of paediatric development assessment practices were notably lacking. CONCLUSION: Paediatricians play an important role in ensuring equitable access to early identification and intervention for young children with/at risk of NDDs. However, strengthening paediatric outpatient care of children with NDD requires clearer guidance across contexts; training that is responsive to shifting roles within interdisciplinary models of developmental assessment and improved data to enhance equity and quality of developmental assessment for children with/at risk of NDDs.

What's data got to do with it? A scoping review of data used as evidence in policies promoting the health of Aboriginal and Torres Strait Islander children in the Northern Territory, Australia.

ISSUE ADDRESSED: Accurate data on the health of Australia's First Nations peoples is critical in determining appropriate public health programs and establishing a baseline against which to measure progress. The effective translation of evidence into practice continues to be a challenge for Australian health departments and policymakers. The objective of this scoping review was to (i) determine the extent and range of policies relevant to the health and well-being of Aboriginal and Torres Strait Islander children in the Northern Territory (NT); to (ii) identify what data is reported to be used as evidence to reconcile policy goals with outcomes, (iii) to describe issues acknowledged by policy makers relating to data availability and/or limitations, and to (iv) examine how principles of Indigenous inclusion and self-determination are included in these policies. METHODS: A search for current policy documents, strategic plans/initiatives or frameworks was conducted across Ovid Medline, PubMed, Informit, Scopus, in addition to a web-based search for grey literature. Current policy documents for the period 2010-2021 were included providing at least one of the goals or objectives were relevant to the health and well-being of Australian Aboriginal and Torres Strait Islander children from the NT. RESULTS: The search located 2610 unique citations. Full-text screening was conducted on 85 documents, a total of 49 policy documents or strategic plans/frameworks were included in the final synthesis. The source of data being used as evidence was unclear or absent in 10 of the 49 (20.4%) identified policy documents. Limitations of the available data were mentioned to some extent, but detailed information on quality and completeness was largely absent. In mapping the key principles of working in Aboriginal and Torres Strait Islander health contexts, only two policies articulated the need for information sharing and data governance. CONCLUSIONS: This review underscores the importance of providing clear information about which data is being used to inform policy decisions so that they may be evaluated and critiqued in meaningful ways that ensure decision makers are accountable. SO WHAT?: Specific data items and/or indicators should be explicitly referenced as evidence used in the development of policies promoting the health of Aboriginal and Torres Strait Islander children and their communities from the outset so that evaluation is clear and policy makers are held accountable.

Hyperglycemia in pregnancy and developmental outcomes in children at 18-60 months of age: the PANDORA Wave 1 study.

This study aimed to explore the association between hyperglycemia in pregnancy (type 2 diabetes (T2D) and gestational diabetes mellitus (GDM)) and child developmental risk in Europid and Aboriginal women.PANDORA is a longitudinal birth cohort recruited from a hyperglycemia in pregnancy register, and from normoglycemic women in antenatal clinics. The Wave 1 substudy included 308 children who completed developmental and behavioral screening between age 18 and 60 months. Developmental risk was assessed using the Ages and Stages Questionnaire (ASQ) or equivalent modified ASQ for use with Aboriginal children. Emotional and behavioral risk was assessed using the Strengths and Difficulties Questionnaire. Multivariable logistic regression was used to assess the association between developmental scores and explanatory variables, including maternal T2D in pregnancy or GDM.After adjustment for ethnicity, maternal and child variables, and socioeconomic measures, maternal hyperglycemia was associated with increased developmental "concern" (defined as score ≥1 SD below mean) in the fine motor (T2D odds ratio (OR) 5.30, 95% CI 1.77-15.80; GDM OR 3.96, 95% CI 1.55-10.11) and problem-solving (T2D OR 2.71, 95% CI 1.05-6.98; GDM OR 2.54, 95% CI 1.17-5.54) domains, as well as increased "risk" (score ≥2 SD below mean) in at least one domain (T2D OR 5.33, 95% CI 1.85-15.39; GDM OR 4.86, 95% CI 1.95-12.10). Higher maternal education was associated with reduced concern in the problem-solving domain (OR 0.27, 95% CI 0.11-0.69) after adjustment for maternal hyperglycemia.Maternal hyperglycemia is associated with increased developmental concern and may be a potential target for intervention so as to optimize developmental trajectories.

Introduction of the neonatal sepsis calculator at a low-dependency special care nursery in Australia.

BACKGROUND: The neonatal early onset sepsis calculator (Sepsis Calculator) is a screening tool for managing neonates at risk of early onset sepsis (EOS). In large tertiary centers it has been found to reduce empiric antibiotic use in newborns with suspected EOS by up to half, without missing EOS confirmed by blood culture. AIMS: To evaluate the effect of implementation of the Sepsis Calculator at a low-dependency special care nursery in Australia on rates of antibiotic treatment for suspected EOS in newborns, and, to determine the compliance rate in applying the Sepsis Calculator. METHODS: We undertook a retrospective medical record audit at The Women's at Sandringham Hospital during two two-month periods; pre- and post-introduction of the Sepsis Calculator. The management of infants suspected of EOS and length of stay post-delivery were compared. Compliance with Sepsis Calculator use was measured. RESULTS: 526 infants were included: 266 in period 1 and 260 in period 2. There was no significant change in the proportion of infants who received empirical antibiotics for suspected EOS following introduction of the Sepsis Calculator (6 of 266 during period 1; 2.2% vs. 8 of 260 during period 2; 3.1%; p = .558). The median length of stay (LOS) of infants born to GBS positive mothers who received inadequate antibiotic prophylaxis, decreased from 39.5 h (IQR 28.4 to 47.4) to 25.5 h (IQR 22.2 to 34.2), p = .004 after Sepsis Calculator implementation. The compliance rate for Sepsis Calculator use was 82.3% (214 of 260). CONCLUSIONS: While we did not see a reduction in empirical antibiotic use, this is likely due to the already low baseline antibiotic treatment rate at our institution. Further exploration of how the calculator benefits infants and improves care in non-tertiary special care nurseries, including evaluating LOS, is needed.

The ASQ-TRAK: Validating a culturally adapted developmental screening tool for Australian Aboriginal children.

BACKGROUND: Developmental monitoring, performed using culturally relevant tools, is of critical importance for all young children. The ASQ-TRAK is the culturally and linguistically adapted Ages and Stages Questionnaire (ASQ-3), a developmental screening tool, for Australian Aboriginal children. While the ASQ-TRAK has been well received in practice, investigating its psychometric properties will enable professionals to make informed decisions about its use. AIMS: To conduct a rigorous validation study of the ASQ-TRAK by applying Kane's argument-based approach. SUBJECTS: The ASQ-TRAK, Bayley-III and/or BDI-2 were administered cross-sectionally to 336 Australian Aboriginal children aged 2-48 months across ten participating sites in the Northern Territory and South Australia. A sample of staff and caregivers completed feedback surveys about the ASQ-TRAK. RESULTS: ASQ-TRAK domain scores were moderately positively correlated with corresponding domain scores on the Bayley-III or BDI-2. Inter-rater and inter-instrument reliability were high. Sensitivity (83%), specificity (83%) and negative predictive value (99%) were acceptable. Staff and caregivers expressed high levels of satisfaction with the ASQ-TRAK. CONCLUSIONS: Regular developmental screening can provide important information about developmental vulnerability and the need for services. The ASQ-TRAK should be administered by trained Aboriginal community-based workers and the implementation approach carefully planned. Areas for future research include longitudinal follow-up of children, investigating existing norms and cut-off scores, and considering the appropriateness of the ASQ-TRAK with Aboriginal people from different locations. The ASQ-TRAK has the potential to fill an important gap by enabling better access to high-quality developmental monitoring and targeted early intervention.

A global perspective of Indigenous child health research: a systematic review of longitudinal studies.

BACKGROUND: Rigorously designed longitudinal studies can inform how best to reduce the widening health gap between Indigenous and non-Indigenous children. METHODS: A systematic review was performed to identify and present the breadth and depth of longitudinal studies reporting the health and well-being of Indigenous children (aged 0-18 years) globally. Databases were searched up to 23 June 2020. Study characteristics were mapped according to domains of the life course model of health. Risk of bias was assessed using the National Institutes of Health (NIH) Study Quality Assessment Tools. Reported level of Indigenous involvement was also appraised; PROSPERO registration CRD42018089950. RESULTS: From 5545 citations, 380 eligible papers were included for analysis, representing 210 individual studies. Of these, 41% were located in Australia (n = 88), 22.8% in the USA (n = 42), 11.9% in Canada (n = 25) and 10.9% in New Zealand (n = 23). Research tended to focus on either health outcomes (50.9%) or health-risk exposures (43.8%); 55% of studies were graded as 'good' quality; and 89% of studies made at least one reference to the involvement of Indigenous peoples over the course of their research. CONCLUSIONS: We identified gaps in the longitudinal assessment of cultural factors influencing Indigenous child health at the macrosocial level, including connection to culture and country, intergenerational trauma, and racism or discrimination. Future longitudinal research needs to be conducted with strong Indigenous leadership and participation including holistic concepts of health. This is critical if we are to better understand the systematic factors driving health inequities experienced by Indigenous children globally.

Acceptability of the culturally adapted ASQ-TRAK developmental screening tool to caregivers of Aboriginal children.

AIM: The Ages and Stages Questionnaire-Talking about Raising Aboriginal Kids (ASQ-TRAK) culturally adapted developmental screening tool is widely used in Australian Aboriginal communities. However, there has been limited exploration of the tool's acceptability to caregivers. The aim of the study is to determine the acceptability of the ASQ-TRAK developmental screening tool to caregivers of Aboriginal children in urban, regional and remote South Australia. METHODS: Caregivers of Aboriginal children completed a survey regarding acceptability of the ASQ-TRAK. Convenience samples of caregivers were invited to a telephone interview. RESULTS: Ninety-two caregivers completed the survey (96% response). Acceptability (92%) and caregiver satisfaction (73%) were high. Families perceived the screen as easy to use and understand, strengths-based and providing valuable information about their child's development. CONCLUSIONS: The ASQ-TRAK tool was highly acceptable to caregivers in Aboriginal communities in South Australia. The study highlights the importance of culturally safe practice and supports ASQ-TRAK implementation. Broader use and further evaluation of the ASQ-TRAK in Aboriginal communities needs consideration.

Practitioners' perceptions of the ASQ-TRAK developmental screening tool for use in Aboriginal children: A preliminary survey.

AIM: To determine health practitioners' experience of using the culturally adapted Ages and Stages Questionnaire - Talking about Raising Aboriginal Kids (ASQ-TRAK) and the Ages and Stages Questionnaire-3 (ASQ-3) with Australian Aboriginal families and their perception about parents' acceptability and understanding of the instruments. METHODS: We surveyed a convenience sample of practitioners who had used both the ASQ-TRAK and the ASQ-3 developmental screening tools with Aboriginal children in the Northern Territory and South Australia. We compared their experience and perception about parents' acceptability and understanding of both instruments. RESULTS: All 38 respondents used the ASQ-3 and 35 the ASQ-TRAK; 100% rated the ASQ-TRAK as more acceptable and easier to understand for parents compared with 68% (P < 0.001) and 52.6% (P < 0.001), respectively, for the ASQ-3. A greater proportion of respondents were satisfied using the ASQ-TRAK (100%) than the ASQ-3 (65.7%) (P = 0.003). A higher proportion indicated that the ASQ-TRAK was respectful (85.3% compared with ASQ-3 27.8%, P < 0.001), culturally relevant (70.6% compared to 16.2%, P < 0.001) and engaging (76.5% compared to 16.2%, P < 0.001). Qualitative exploration of respondents' comments supported the quantitative findings. The ASQ-TRAK was considered more culturally appropriate, engaging and useful. CONCLUSIONS: Our findings demonstrate that the culturally adapted ASQ-TRAK is preferred to the ASQ-3 by health practitioners in the Australian Aboriginal context. Failing to address cultural and linguistic factors and applying measurement tools developed for one population to another, is problematic in any setting. While further research is required to explore parents' experience directly, these data provide support for the ASQ-TRAK to be used in this context.

Important components of a programme for children with medical complexity: An Australian perspective.

BACKGROUND: Children with medical complexity (CMC) have high care needs, often unmet by traditional healthcare models. In response to this need, the Complex Care Service (CCS) at The Royal Children's Hospital (RCH), Melbourne was created. Although preliminary parent satisfaction data were available, we lacked knowledge of how the various components of the expanded service were valued and contributed to overall caregiver satisfaction. AIM: The aims of this study were to (a) determine what caregivers value most about the CCS and (b) explore caregiver perceptions of care. METHODS: All caregivers of children enrolled in the RCH CCS in April 2017 were invited to participate. A purposefully designed survey explored caregiver perceptions of care, including patient quality of care; the extent to which the CCS components added value and satisfaction; and frequency of contact. Participants were also invited to answer open-ended questions and provide general comments. RESULTS: Responses were received from 53 families (51%). We found that 24-hr phone advice, coordination of appointments, a key contact, and access to timely information were the most important components of the service. More than 90% of caregivers indicated that they were satisfied with care and that the CCS improved their child's quality of care. Coordination, communication, family-centred care, quality care, and access were emergent themes within comments. CONCLUSION: This study provides important information regarding the design and operation of services for CMC throughout Australia and further afield. Our findings highlight the importance of the key contact and family-centred care. This has implications for practice, as maintaining service quality, as the CCS expands and is implemented more widely, is a major sustainability challenge. It is crucial that we have a detailed understanding of what elements are required to support effective care coordination, to achieve successful implementation on a larger scale.

Validation of a culturally adapted developmental screening tool for Australian Aboriginal children: Early findings and next steps.

BACKGROUND: Early detection of developmental problems is important for facilitating access to targeted intervention and maximising its positive effects. The later problems are identified, the more likely that they will become increasingly difficult to ameliorate. Standardised developmental screening tools are known to improve detection rates of developmental problems compared to clinical judgement alone and are widely recommended for use with all children. The Ages and Stages Questionnaire (ASQ-3) is a tool that is widely used in Australia. However, mainstream screening tools may not be appropriate for remote-dwelling Australian Aboriginal children. While Australian Aboriginal children face multiple developmental risk factors, there are no developmental screening tools that have been validated for use in this population. AIMS: To determine the concurrent validity of the culturally adapted ASQ-3 - the ASQ-TRAK - for Australian Aboriginal children compared to the Bayley Scales of Infant and Toddler Development (Bayley-III), a standardised, professionally administered developmental assessment. SUBJECTS: The ASQ-TRAK and Bayley-III were administered cross-sectionally to 67 Central Australian Aboriginal children between 2 and 36months of age. RESULTS: The ASQ-TRAK communication, gross motor, fine motor and problem-solving domains and the corresponding domains on the Bayley-III were moderately correlated. Overall sensitivity for the ASQ-TRAK was 71% (95% CI 29-96) and specificity was 92% (95% CI 88-99). Percentage agreement between the ASQ-TRAK and the Bayley-III was 90%. CONCLUSIONS: The ASQ-TRAK shows promise as a tool that can be used to improve developmental monitoring for remote dwelling Australian Aboriginal children. Further research is necessary to build on the current findings.

Challenges in monitoring the development of young children in remote Aboriginal health services: clinical audit findings and recommendations for improving practice.

INTRODUCTION: Early detection of developmental difficulties is universally considered a necessary public health measure, with routine developmental monitoring an important function of primary healthcare services. This study aimed to describe the developmental monitoring practice in two remote Australian Aboriginal primary healthcare services and to identify gaps in the delivery of developmental monitoring services. METHODS: A cross-sectional baseline medical record audit of all resident children aged less than 5 years in two remote Aboriginal health centres in the Northern Territory (NT) in Australia was undertaken between December 2010 and November 2011. RESULTS: A total of 151 medical records were audited, 80 in Community A and 71 in Community B. Developmental checks were more likely among children who attended services more regularly. In Community A, 63 (79%) medical records had some evidence of a developmental check and in Community B there were 42 (59%) medical records with such evidence. However, there was little indication of how assessments were undertaken: only one record noted the use of a formal developmental screening measure. In Community A, 16 (16%) records documented parent report and 20 (20%) documented staff observations, while in Community B, the numbers were 2 (3%) and 11 (19%), respectively. The overall recorded prevalence of developmental difficulties was 21% in Community A and 6% in Community B. CONCLUSIONS: This is the first study to describe the quality of developmental monitoring practice in remote Australian Aboriginal health services. The audit findings suggest the need for a systems-wide approach to the delivery and recording of developmental monitoring services. This will require routine training of remote Aboriginal health workers and remote area nurses in developmental monitoring practice including the use of a culturally appropriate, structured developmental screening measure.

Adaptation of the Ages and Stages Questionnaire for Remote Aboriginal Australia.

A key challenge to providing quality developmental care in remote Aboriginal primary health care (PHC) centers has been the absence of culturally appropriate developmental screening instruments. This study focused on the cross-cultural adaptation of the Ages and Stages Questionnaires, 3rd edition (ASQ-3), with careful attention to language and culture. We aimed to adapt the ASQ-3 for use with remote dwelling Australian Aboriginal children, and to investigate the cultural appropriateness and feasibility of the adapted ASQ-3 for use in this context. We undertook a qualitative study in two remote Australian Aboriginal communities, using a six-step collaborative adaptation process. Aboriginal Health Workers (AHWs) were trained to use the adapted ASQ-3, and follow-up interviews examined participants' views of the cultural acceptability and usefulness of the adapted instrument. The adapted ASQ-3 was found to have high face validity and to be culturally acceptable and relevant to parents, AHWs, and early childhood development experts.

Trial of a developmental screening tool in remote Australian Aboriginal communities: a cautionary tale.

AIM: To trial the Brigance developmental screening tool as an instrument for identifying Australian Aboriginal children at risk of developmental disability and requiring diagnostic developmental assessment. METHODS: We conducted a cross-sectional study of Australian Aboriginal children, aged 3-7 years, resident in three remote communities in the Northern Territory. Following informed consent, children were screened by a paediatrician using the Brigance screen. RESULTS: There were 195 children identified as eligible, and 124 (64%) participated. All children screened, scored below the cut-off for detecting children likely to have developmental disabilities or academic delays. Furthermore, all children scored below the at-risk cut-offs that indicate high probability of disabilities in at-risk children. CONCLUSIONS: The Brigance screen identified all children in these high-risk Aboriginal communities as well behind their age peers. Language and cultural relevance, and the method of administration limit the use of this screening tool. However, we cannot ignore the uniformly poor performance on a mainstream tool used with children expected to succeed in a mainstream educational setting. Recommendations include adapting an appropriate instrument to guide developmental surveillance and monitoring in remote Australian Aboriginal communities. This study further supports the pressing need for quality early childhood services that address the significant risk confronting Aboriginal children and prepare them in a way that ensures school and future success.