Search

Watch Me Grow - Electronic (WMG-E) platform is an online resource to enhance the capacity of general practitioners (GPs) to involve parents in developmental surveillance. The aim of this study was to evaluate the acceptability and perceived utility of WMG-E.Semi-structured interviews were conducted with GPs/paediatricians (n = 6) and parents (n = 6). Focus groups were conducted with child and family health nurses (n = 25). Transcripts were analysed thematically.Participants indicated that WMG-E could empower clinicians and parents by enhancing health literacy about child developmental issues, but that it could also be disempowering if not used carefully. Clinicians mentioned being strategic at health service and public policy levels. A final theme was that of the need to balance widespread promotion with its targeted use.This study established the face validity of WMG-E, and reveals key lessons to inform the ways in which it is promoted and used.

Tele-assessments may enable specialist evaluation of students in schools and their progress following intervention. The aim of this project was to evaluate the feasibility of using videoconferencing technology to assess students with reading difficulties in the school setting and obtain the perspectives of teachers supporting the students during the assessment. Teachers ( n = 57) of 71 primary school age students participated in the study. Teachers provided feedback on the tele-assessment by completing questionnaires about students’ behaviours and the quality of the technology and assessment process. Randomly selected teachers ( n = 24) were invited to participate in a semi-structured interview to provide qualitative feedback. Tele-assessments were completed in 93.4% of the sample. Support teachers reported satisfaction with the audio and visual quality as well as the assessment process. The majority of students completed the tele-assessment with good compliance, engagement and attention. Feedback from support teachers also reflected the strengths of tele-assessments, such as better access to service, cost saving and convenience. Barriers to tele-assessments included technical difficulties, assessment limitations and equipment issues at schools. Tele-assessment is a feasible method of objectively measuring outcomes of students following an intervention. Tele-assessment at school is largely accepted by teachers who supported students in this study. Feedback obtained from this research may be used to offer guidance on undertaking tele-assessments with students in the school setting.

Introduction: Identifying differences in outcome of basilar artery occlusion (BAO) between males and females may be useful in aiding clinical management. Recent studies have demonstrated widespread underrepresentation of women in acute stroke clinical trials. This international multicentre study aimed to determine sex differences in outcome after mechanical thrombectomy (MT) for patients with acute BAO. Methods: We performed a retrospective analysis of consecutive patients with BAO who had undergone MT in seven stroke centres across five countries (Singapore, Taiwan, United Kingdom, Sweden, and Germany), between 2015 and 2020. Primary outcome was a favourable functional outcome measured by a modified Ranking Scale (mRS) of 0–3 at 90 days. Secondary outcomes were mRS 0–3 upon discharge, mortality, symptomatic intracranial haemorrhage (sICH) and subarachnoid haemorrhage (SAH). Results: Among the 322 patients who underwent MT, 206 (64.0%) patients were male and 116 (36.0%) were female. Females were older than males (mean ± SD 70.9 ± 14.3 years vs. 65.6 ± 133.6 years; p = 0.001) and had higher rates of atrial fibrillation (38.9% vs. 24.2%; p = 0.012). Time from groin puncture to reperfusion was shorter in females than males (mean ± SD 57.2 ± 37.2 min vs. 71.1 ± 50.9 min; p = 0.021). Despite these differences, primary and secondary outcome measures were similar in females and males, with comparable rates of favourable 90-day mRS scores (mean ± SD 46 ± 39.7 vs. 71 ± 34.5; OR = 1.20; 95% confidence interval [CI] = 0.59–2.43; p = 0.611), favourable discharge mRS scores (mean ± SD 39 ± 31.6 vs. 43 ± 25.9; OR = 1.38; 95% CI = 0.69–2.78; p = 0.368) and in-hospital mortality (mean ± SD 30 ± 25.9 vs. 47 ± 22.8; OR = 1.15; 95% CI = 0.55–2.43; p = 0.710. Rates of complications such as sICH (mean ± SD 5 ± 4.3 vs. 9 ± 4.4; OR = 0.46; 95% CI = 0.08–2.66; p = 0.385) and SAH (mean ± SD 4 ± 3.4 vs. 5 ± 2.4; OR = 0.29; 95% CI = 0.03–3.09; p = 0.303) comparably low in both groups. Conclusion: Females achieved comparable functional outcomes compared with males after undergoing MT for BAO acute ischemic stroke.

Despite long wait times, public paediatric developmental assessment services remain crucial for the assessment of vulnerable children, particularly those from disadvantaged backgrounds. Assessment represents a critical opportunity to guide the placement of supports to improve functioning and developmental trajectories. There is, however, a lack of research examining how multi-disciplinary assessment services conduct assessments, synthesise results and provide reports to families. This study retrospectively examined 85 reports provided to caregivers at a multi-disciplinary developmental assessment service. Reports were evaluated for whether they (1) addressed caregiver perceived needs, (2) used available data to provide appropriate information about child needs, (3) provided recommendations that were actionable and specific to needs, (4) had appropriate readability levels and (5) followed existing autism assessment guidelines. Findings showed clinicians were more focused on autism diagnostic needs while caregivers were more focused on multiple transdiagnostic needs. Recommendations provided in the reports that were related to autism diagnoses were specific and actionable, but reports rarely addressed transdiagnostic needs or comorbidities (e.g. cognitive impairments, mental health). For instance, only 13% of reports contained recommendations for conditions other than autism spectrum disorder, despite 61% of the population receiving two or more diagnoses. Reports largely followed autism assessment guidelines, but the language used was more complex for families than what is typically recommended. Recommendations for future practice are provided to improve the quality of reports and to better meet the needs of children and families attending developmental assessment services. Lay abstract Despite long wait times, public paediatric developmental assessment services remain crucial for assessment of children. Assessment is a critical opportunity to guide the placement of supports to improve outcomes. There is little research examining how clinical assessment services conduct their assessments, present results and write reports to families. This study examined 85 reports provided to caregivers at a developmental assessment service. Reports were evaluated for whether they (1) addressed caregiver perceived needs, (2) used available data to provide appropriate information about child needs, (3) provided recommendations that were actionable and specific to needs, (4) had appropriate readability levels and (5) followed existing autism assessment guidelines. Findings showed clinicians were more focused on autism diagnostic needs while caregivers were more focused on non-diagnostic needs. Recommendations related to autism diagnoses were actionable, but they rarely addressed comorbidities such as cognitive impairments or mental health. For instance, only 13% of reports contained recommendations for conditions other than autism spectrum disorder, despite 61% of the population receiving two or more diagnoses. Reports largely followed autism assessment guidelines, but the language used was more complex for families than recommended. Recommendations for future practice are provided so that consideration may be given to how to improve the quality and effectiveness of reports for families attending services.

ObjectivesImplementing support and services early in the life course has been shown to promote positive developmental outcomes for children at high likelihood of developmental conditions including autism. This study examined parents’/caregivers’ experiences and perceptions about a digital developmental surveillance pathway for autism, the autism surveillance pathway (ASP), and usual care, the surveillance as usual (SaU) pathway, in the primary healthcare general practice setting.DesignThis qualitative study involves using a convenience selection process of the full sample of parents/caregivers that participated in the main programme, ‘General Practice Surveillance for Autism’, a cluster-randomised controlled trial study. All interviews were audio-recorded, transcribed and coded using NVivo V.12 software. An inductive thematic interpretive approach was adopted and data were analysed thematically.ParticipantsTwelve parents/caregivers of children with or without a developmental condition/autism (who participated in the main programme) in South Western Sydney and Melbourne were interviewed.SettingsAll interviews were completed over the phone.ResultsThere were seven major themes and 20 subthemes that included positive experiences, such as pre-existing patient–doctor relationships and their perceptions on the importance of knowing and accessing early support/services. Barriers or challenges experienced while using the SaU pathway included long waiting periods, poor communication and lack of action plans, complexity associated with navigating the healthcare system and lack of understanding by general practitioners (GPs). Common suggestions for improvement included greater awareness/education for parents/carers and the availability of accessible resources on child development for parents/caregivers.ConclusionThe findings support the use of digital screening tools for developmental surveillance, including for autism, using opportunistic contacts in the general practice setting.Trial registration numberANZCTR (ACTRN12619001200178).

IntroductionThe increasing prevalence of developmental disorders in early childhood poses a significant global health burden. Early detection of developmental problems is vital to ensure timely access to early intervention, and universal developmental surveillance is recommended best practice for identifying issues. Despite this, there is currently considerable variation in developmental surveillance and screening between Australian states and territories and low rates of developmental screening uptake by parents. This study aims to evaluate an innovative web-based developmental surveillance programme and a sustainable approach to referral and care pathways, linking primary care general practice (GP) services that fall under federal policy responsibility and state government-funded child health services.Methods and analysisThe proposed study describes a longitudinal cluster randomised controlled trial (c-RCT) comparing a ‘Watch Me Grow Integrated’ (WMG-I) approach for developmental screening, to Surveillance as Usual (SaU) in GPs. Forty practices will be recruited across New South Wales and Queensland, and randomly allocated into either the (1) WMG-I or (2) SaU group. A cohort of 2000 children will be recruited during their 18-month vaccination visit or opportunistic visit to GP. At the end of the c-RCT, a qualitative study using focus groups/interviews will evaluate parent and practitioner views of the WMG-I programme and inform national and state policy recommendations.Ethics and disseminationThe South Western Sydney Local Health District (2020/ETH01625), UNSW Sydney (2020/ETH01625) and University of Queensland (2021/HE000667) Human Research Ethics Committees independently reviewed and approved this study. Findings will be reported to the funding bodies, study institutes and partners; families and peer-reviewed conferences/publications.Trial registration numberANZCTR12621000680864.

Spelling analyses can be used to investigate sources of linguistic knowledge underlying children’s literacy development and may be useful in predicting later achievement. This study explored the utility of six analysis metrics in predicting the spelling achievement of school-aged children with literacy learning difficulties via post-hoc analyses of data collected in a clinic. Participants were 48 children aged 7 to 12 years. Spelling accuracy was assessed using the Dalwood Spelling Test (Dalwood Assessment Centre, 2008) at baseline and 37–70 weeks later. Spelling attempts at baseline were analysed using metrics designed to quantify evidence of phonological, orthographic, and/or morphological awareness. Scores from each metric were associated with baseline and later conventional spelling accuracy. A metric which credits evidence of phonological, orthographic and morphological awareness shared a significantly stronger association with baseline conventional spelling accuracy as compared to the remaining metrics. There were no significant differences in the strength of associations among the baseline metrics and later spelling achievement. Supplementary analyses focused exclusively on children’s spelling errors returned a similar pattern of results with a few notable exceptions. The utility of spelling analyses is discussed.

Difficulties in adaptive functioning are common in autism spectrum disorder (ASD) and contribute to negative outcomes across the lifespan. Research indicates that cognitive ability is related to degree of adaptive functioning impairments, particularly in young children with ASD. However, the extent to which other factors, such as socioeconomic status (SES) and ASD symptom severity, predict impairments in adaptive functioning remains unclear. The goal of this study was to determine the extent to which SES, ASD symptom severity, and cognitive ability contribute to variability in domain-specific and global components of adaptive functioning in preschool-aged children with ASD. Participants were 99 preschool-aged children (2-6 years) with ASD who attended a tertiary diagnostic service. Results demonstrate that cognitive ability accounted for a significant proportion of variance in domain-specific and global components of adaptive functioning, with higher cognitive ability predicting better adaptive functioning. Results also demonstrate that SES accounted for some variability in domain-specific communication skills and global adaptive functioning when compared to basic demographic factors alone (age and gender). By contrast, ASD symptom severity did not predict variability in domain-specific or global components of adaptive functioning. These findings provide support for a relationship between cognitive ability and adaptive functioning in preschool-aged children with ASD and help to explain specific contributions of verbal and nonverbal ability to adaptive functioning; from this, we can better understand which children are likely to show the greatest degree of impairments across components of adaptive functioning early in development. LAY SUMMARY: People with autism often have difficulties with everyday communication, daily living, and social skills, which are also called adaptive functioning skills. This study investigated factors that might be related to these difficulties in preschoolers with autism. We found that better cognitive ability, but not autism symptoms, were associated with better adaptive functioning. This suggests that interventions for young children with autism should take into account cognitive ability to better understand which children are likely to have difficulties with adaptive functioning.

ObjectivesEarly developmental assessment is crucial for effective support and intervention. This study examined factors that contribute to (a) older child age when caregivers first became concerned about their child’s development and (b) older child age at the point of entry into developmental and diagnostic assessment. We also quantified how factors contributed to risk of children not receiving an assessment by 5 years and considered the acceptability of electronic data capture for families.DesignThis cross-sectional study collected information about caregiver developmental concerns, family history and child characteristics.SettingChildren and families entered a large, publicly funded hospital-based paediatric developmental assessment service.ParticipantsConsecutively enrolled children (N=916) aged 6 months to 17 years with neurodevelopmental concerns and their caregivers.Main outcomes and measuresA developmental history questionnaire completed by caregivers.ResultsThe average age that caregivers identified developmental concerns was 3.0 years of age but the average age of a receiving a developmental assessment was 6.6 years. Only 46.4% of children received a diagnostic assessment by 5 years of age, even though 88.0% of caregivers were concerned about their child’s development by that age. Parental age, relationship status, education level, prior use of support services and being from a culturally and linguistically diverse background contributed to age at identification of concern, age at diagnostic assessment and the likelihood of receiving a diagnostic assessment by 5 years. Electronic data capture had high acceptability, with 88.2% of caregivers reporting a preference for electronic completion of questionnaires.ConclusionsThe study shows a substantial delay in diagnostic assessments that leaves most vulnerable children without an assessment by school age and highlights contributors to delays. These delays highlight the complexity of delivering early intervention and support policies that rely on swift and appropriate developmental assessment to vulnerable families.

To qualitatively explore reported clinical incidents of children with intellectual disability aged 0 to 18 years.A secondary qualitative evaluation using latent content analysis was used on retrospective hospital incident management reporting data (1st January-31st December 2017) on 1367 admissions for 1018 randomly selected patients admitted to two tertiary children's hospitals in New South Wales, Australia. Sex and age at admission in children with and without intellectual disability: 83 (43.7%) versus 507 (43.1%) females and 107 (56.3%) versus 670 (56.9%) males, p=0.875; median age 3 years (0-18y) versus 4 years (0-18y), p=0.122. Of these, 44 patient safety incident reports for children with intellectual disability (sex, SD, and range) and 167 incident reports for children without intellectual disability (sex, SD, and range) were found and analysed.Ten themes were synthesized from the data and represented the groups with and without intellectual disability. Children with intellectual disability had a significantly higher proportion of care issues identified by their parents. They also had higher rates of multiple reported clinical incidents per admission compared to children without intellectual disability.Mechanisms to advocate and raise patient safety issues for children with intellectual disability are needed. Partnerships with parents and training of staff in reporting clinical incidents for this population would enhance the embedding of reasonable adaptations into incident management systems for ongoing monitoring and improvement.Children with intellectual disability experienced multiple patient safety incidents per admission compared to children without intellectual disability. Children with intellectual disability had significantly increased rates of parent-identified incidents. Issues with medication, communication, delays in diagnosis and treatment, and identification of deterioration were noted.

Children with intellectual disability are vulnerable to adverse events in hospital due to limited staff skills and system safeguards.A systematic review of the literature explored healthcare staff (HCS) experiences in providing care for children and young persons with intellectual disability in hospital using thematic analysis.Eleven of the 735 publications extracted identified the following themes: distress, communication, partnerships, identification, training and education and optimising care. Consistent findings suggest that HCS feel unskilled in providing care for the child with intellectual disability in hospital settings. HCS recognised the role of parents as experts of their child but also feel unsettled when challenged by them. Skills in communicating with the child, developing partnerships with parents, having identification systems to plan for reasonable adjustments was key to improving care.Organisational advocacy, practical skills training in identification, reasonable adjustments and improved attitudes are important for HCS to provide safe and quality care.

Background and Purpose Mechanical thrombectomy (MT) is an effective treatment for patients with basilar artery occlusion (BAO) acute ischemic stroke. It remains unclear whether bridging intravenous thrombolysis (IVT) prior to MT confers any benefit. This study compared the outcomes of acute BAO patients who were treated with direct MT versus combined IVT plus MT.Methods This multicenter retrospective cohort study included patients who were treated for acute BAO from eight comprehensive stroke centers between January 2015 and December 2019. Patients received direct MT or combined bridging IVT plus MT. Primary outcome was favorable functional outcome defined as modified Rankin Scale 0–3 measured at 90 days. Secondary outcome measures included mortality and symptomatic intracranial hemorrhage (sICH).Results Among 322 patients, 127 (39.4%) patients underwent bridging IVT followed by MT and 195 (60.6%) underwent direct MT. The mean±standard deviation age was 67.5±14.1 years, 64.0% were male and median National Institutes of Health Stroke Scale was 16 (interquartile range, 8 to 25). At 90-day, the rate of favorable functional outcome was similar between the bridging IVT and direct MT groups (39.4% vs. 34.4%, P=0.361). On multivariable analyses, bridging IVT was not as Comorbidisociated with favorable functional outcome, mortality or sICH. In subgroup analyses, patients with underlying atherosclerosis treated with bridging IVT compared to direct MT had a higher rate of favorable functional outcome at 90 days (37.2% vs. 15.5%, P=0.013).Conclusions Functional outcomes were similar in BAO patients treated with bridging IVT versus direct MT. In the subgroup of patients with underlying large-artery atherosclerosis stroke mechanism, bridging IVT may potentially confer benefit and this warrants further investigation.

Children with intellectual disability experience significant challenges in accessing and receiving high-quality healthcare leading to poorer health outcomes and negative patient experiences. Families of these children often report a need for healthcare staff to better understand, communicate, and collaborate for better care while staff acknowledge a lack of training. To address this, we utilised an action research framework with a pre- and post- survey to evaluate an integrated continuing professional development and quality improvement program combining strategies from education, behavioural psychology and quality improvement that was delivered in two departments within a tertiary children’s Hospital in Metropolitan Sydney in 2019-2020. Parents reported noticeable changes in the clinical practice of staff, and staff acknowledged and attributed their shift in behaviour to raising awareness and discussions around necessary adaptations. The program demonstrates a novel method for knowledge translation to practice and systems improvements.

Background: There is a growing need for cost-efficient and patient-centred approaches to support families in hospital and community-based neurodevelopmental services. For such purposes, electronic data collection (EDC) may hold advantages over paper-based data collection. Such EDC approaches enable automated data collection for scoring and interpretation, saving time for clinicians and services and promoting more efficient service delivery. Objective: The current pilot study evaluated the efficacy of EDC for the Child Development Unit, a hospital-based diagnostic assessment clinic in the Sydney Children’s Hospital Network. Caregiver response rates and preference for EDC or paper-based methods were evaluated as well as the moderating role of demographic characteristics such as age, level of education and ethnic background. Methods: Families were sent either a paper-based questionnaire via post or an electronic mail link for completion before attending their first onsite clinic appointment for assessment. A total of 62 families were provided a paper version of the questionnaire, while 184 families were provided the online version of the same questionnaire. Results: Completion rates of the questionnaire before the first appointment were significantly higher for EDC (89.1%) in comparison to paper-based methods (38.7%; P

BACKGROUND There is a growing need for cost-efficient and patient-centered approaches to support families in hospital- and community-based neurodevelopmental services. For such purposes, electronic data collection (EDC) may hold advantages over paper-based data collection. Such EDC approaches enable automated data collection for scoring and interpretation, saving time for clinicians and services and promoting more efficient service delivery. OBJECTIVE This pilot study evaluated the efficacy of EDC for the Child Development Unit, a hospital-based diagnostic assessment clinic in the Sydney Children’s Hospital Network. Caregiver response rates and preference for EDC or paper-based methods were evaluated as well as the moderating role of demographic characteristics such as age, level of education, and ethnic background. METHODS Families were sent either a paper-based questionnaire via post or an electronic mail link for completion before attending their first on-site clinic appointment for assessment. A total of 62 families were provided a paper version of the questionnaire, while 184 families were provided the online version of the same questionnaire. RESULTS Completion rates of the questionnaire before the first appointment were significantly higher for EDC (164/184, 89.1%) in comparison to paper-based methods (24/62, 39%; PPP=.04). CONCLUSIONS These results show that EDC is feasible in hospital-based clinics and has the potential to offer substantial benefits in terms of centralized data collation, time and cost savings, efficiency of service, and resource allocation. The results of this study therefore support the continued use of electronic methods to improve family-centered care in clinical practices.

Aim People with developmental disabilities (DDs) experience significant barriers accessing and receiving optimal health care resulting in poorer health-care outcomes. Continuing professional development (CPD) represents an effective means to alter health-care staff behaviour to improve the care of people with DDs. However, given the scepticism regarding the effectiveness of certain CPD models' ability to alter learner's workplace behaviour, the current pilot study developed and determined the feasibility of a novel CPD programme aimed at improving the health care provided to children with DDs. Methods Motivation for Change (MFC) is a novel CPD programme based on empirically based behaviour and educational strategies including motivational interviewing, flipped classroom and process mapping. It utilises input of patients, practitioners, and family members during administration of the programme. MFC was administered with 14 staff members in a Sydney Children's Hospital Sleep service. Results After MFC engagement, staff reported significant improvements in their knowledge of behavioural characteristics of children with DDs, the difficulties they face, how best to support them within the learner's work setting and confidence in working with children with DDs. There was a non-significant decline in their reported need for further training and expressed high level of satisfaction with the MFC programme. Conclusion MFC represents a feasible means of providing CPD to health-care staff but further research is needed to determine objective clinical behavioural change. Evaluation of the impact on patient health outcomes, parent/child satisfaction, staff sustainability and overall system functioning is also needed. It may represent an effective model of CPD for other targets of health-care improvement.

Introduction Access to cognitive assessments for children living remotely is limited. Telehealth represents a potential cost- and time-effective solution. A pilot study was conducted to determine the feasibility of telehealth to assess cognitive function in children with learning difficulties. Methods Thirty-three children (median age = 9 years 11 months), recruited from the New South Wales (NSW) Centre for Effective Reading, underwent assessment of intellectual ability. Comparisons were made between the intellectual ability index scores obtained by a psychologist sitting face-to-face with the children and another psychologist via telehealth using a web-based platform, Coviu. Results The telehealth administration method yielded comparable results to the face-to-face method. Correlation analyses showed high associations between the testing methodologies on the intellectual ability indices (correlation coefficient range = 0.981–0.997). Discussion Findings indicate that telehealth may be an alternative to face-to-face cognitive assessment. Future work in a broader range of cognitive tests and wider range of clinical populations is warranted.

Introduction: People with intellectual disability (ID) often face additional challenges in accessing health care compared with the general population. In 2012, a pilot multidisciplinary service for children and adolescents (6-18 years of age) with ID was set up by the New South Wales Department of Health in partnership with disability services. Description of practice change implemented: Establishment of a multidisciplinary health team comprising medical, nursing and social work support in a disadvantaged area with a high population of refugees in Sydney. Aim and theory of change: The aim of the pilot service was to test if a multidisciplinary service located in the community improves access to health services and improves the integration and coordination of health and disability services. Targeted population and stakeholders: The target population is school-aged children and adolescents who have a diagnosis of ID and have complex health needs. Stakeholders include the children and their families, the health team staff, specialist and general practice providers, members of the disability and special education sectors, and key staff working for the Intellectual Disability Clinical Network (a government organisation). Timeline: The initial funding was for 3 years commencing mid-2012. Further funding has been granted for the service to continue until 30th December 2019. Innovation, impact and outcomes: A survey was completed in 2015 with 18 health practitioners, which included general practitioners, allied health professionals and case managers. Those who referred individuals to the service found that the service improved their knowledge of the health needs of children, enhanced hospital and community linkages and improved collaboration. The specialists who had patients referred to them also expressed satisfaction and valued receiving comprehensive information about clients. Other benefits reported included better discussion of management plans, collaboration between disciplines, and management of adolescents in transition from paediatric to adult care. A repeat survey done in 2018 with stakeholders confirmed the earlier findings. The major challenges reported lie in the realistic expectation of each other’s roles. Comments on sustainability: This model of care has been working for the past 6 years and is likely to be enhanced with more such teams across the age range within the state. Comments on transferability: This model of care can be replicated in other localities with changes in the processes used to suit population needs. Discussion: The positive gains were achieved with a service model that involved collaboration between public-funded health and disability services. However, in 2017 the model of disability service provision changed to an insurance-based model of non-governmental organisations. This has impacted on the way the team functions and requires ongoing work. Conclusions: A multidisciplinary health team for children and adolescents with ID enhances access and the provision of integrated care with disability services, schools and local health providers working together. It also enhances pathways for children to hospitals. Lessons learned: An integrated multidisciplinary team with a flexible model of care is needed to manage the care of these complex patients and families with psychosocial vulnerabilities. The focus should be on both unmet health and social needs.

Background There is a growing need for cost-efficient and patient-centered approaches to support families in hospital- and community-based neurodevelopmental services. For such purposes, electronic data collection (EDC) may hold advantages over paper-based data collection. Such EDC approaches enable automated data collection for scoring and interpretation, saving time for clinicians and services and promoting more efficient service delivery. Objective This pilot study evaluated the efficacy of EDC for the Child Development Unit, a hospital-based diagnostic assessment clinic in the Sydney Children’s Hospital Network. Caregiver response rates and preference for EDC or paper-based methods were evaluated as well as the moderating role of demographic characteristics such as age, level of education, and ethnic background. Methods Families were sent either a paper-based questionnaire via post or an electronic mail link for completion before attending their first on-site clinic appointment for assessment. A total of 62 families were provided a paper version of the questionnaire, while 184 families were provided the online version of the same questionnaire. Results Completion rates of the questionnaire before the first appointment were significantly higher for EDC (164/184, 89.1%) in comparison to paper-based methods (24/62, 39%; P Conclusions These results show that EDC is feasible in hospital-based clinics and has the potential to offer substantial benefits in terms of centralized data collation, time and cost savings, efficiency of service, and resource allocation. The results of this study therefore support the continued use of electronic methods to improve family-centered care in clinical practices.

A pediatric assessment service for children with Intellectual Disability (ID) was established in a culturally diverse region of Sydney, Australia, to meet the health needs of children and young people with ID. This paper reports on parents’ and providers’ experiences using qualitative and quantitative analysis of surveys. The survey responses from the parents’ enumerated their key concerns and the practical help they received from the service. Responses from service providers reported a high level of satisfaction with the services and valued the quality of assessment reports. The service facilitated inter-agency collaboration and enhanced the access to quality health care.

Background Children with an intellectual disability (ID) have complex health needs that extend beyond the expected cognitive deficits, affecting a myriad of developmental domains. These children frequently receive inadequate health care such that their needs remain poorly managed.Methods Staff from the Sydney Children’s Hospital Network (N = 160) completed a survey on attitudes, experiences, and training satisfaction when working with patients with ID. The 48-question needs analysis survey was distributed electronically to staff from a variety of disciplines and experience levels.Results Although staff considered themselves broadly competent in caring for children with ID, they were less confident in specific skills, such as managing associated challenging behaviours in the clinic. As confidence in skills such as these decreased, the desire for further training increased.Conclusion This study emphasises the importance of providing accessible, high-quality professional development resources to furt...

The increased skin cancer incidence in organ transplant recipients is well-known, but the skin cancer burden at any one time is unknown. Our objective was to estimate the period prevalence of untreated skin malignancy and actinic keratoses in high-risk kidney and liver transplant recipients and to assess associated factors. Organ transplant recipients underwent full skin examinations by dermatologically trained physicians. The proportion of examined organ transplant recipients with histopathologically confirmed skin cancer in the 3-month baseline period was estimated. Prevalence ratios with 95% confidence intervals indicated significant associations. Of 495 high-risk organ transplant recipients (average age = 54 years, time immunosuppressed = 8.9 years), 135 (27%) had basal cell carcinoma, squamous cell carcinoma or Bowen's disease (intraepidermal carcinoma) present and confirmed in the baseline period, with respective prevalence proportions of 10%, 11%, and 18% in kidney transplant recipients and 10%, 9%, and 13% in liver transplant recipients. Over 80% had actinic keratosis present, with approximately 30% having 5 or more actinic keratoses. Organ transplant recipients with the highest skin cancer burden were Australian born, were fair skinned (prevalence ratio = 1.61, 95% confidence interval = [1.07, 2.43]), reported past skin cancer (prevalence ratio =3.39, 95% confidence interval = [1.93, 5.95]), and were receiving the most frequent skin checks (prevalence ratio = 1.76, 95% confidence interval = [1.15, 2.70]). In conclusion, high-risk organ transplant recipients carry a substantial measurable skin cancer burden at any given time and require frequent review through easily accessible, specialized services.

Children and adolescents with intellectual disabilities commonly have unmet complex health needs. Their parents often experience barriers in locating and accessing services to assist in diagnosing and managing those needs. In response to this service gap, a pilot Paediatric Assessment Clinic was established under the auspices of a large paediatric hospital, to offer a comprehensive disability health service for children aged 6 to 18 years with intellectual disabilities and complex health needs. A formative evaluation used observations and a survey of key stakeholders, including 13 parents of children with intellectual disabilities, 6 referring clinicians, and 6 specialists to whom cases were referred post-assessment to understand early outcomes of the pilot service. Findings highlighted the benefits of a multidisciplinary, staged approach to health assessment, coupled with a thorough understanding of family, cultural, and psycho-social issues, in providing interdisciplinary and inter-agency servic...

We refer to the commentary by Teresa Iacono (2017) titled "Unpacking complex health needs: commentary on ‘Assessing health needs of children with intellectual disabilities: a formative evaluation of a pilot service’ " (Milne et al., 2017) and thank her for her comments and the opportunity to have this important discussion (Iacono, 2017; Milne et al., 2017). We would like to provide further clarification on the points raised in her article.

Background/Objectives: The use of high-cost, off-label, unsubsidised drugs has become valuable in the management of dermatology patients with challenging conditions unresponsive to conventional therapy. Currently, there is no dedicated funding and a paucity of evidence for such drugs. The aim of this audit was to review outcomes and costs.

Background and Objectives: Naevi may change in size, shape and colour due to multiple inherent and external factors. We observed naevi changing size in adults at high risk of melanoma, and assessed associations of change with demographic factors, skin type, sites of naevi and history of melanoma. Methods: In total, 29 participants with a personal or first-degree family history of melanoma or those deemed at high risk with multiple naevi of variable morphologies had all melanocytic naevi 0.5-1cm imaged and their maximum diameter recorded. Maximum diameters from repeat imaging of naevi 12 months later were compared to baseline measurements. Newly appearing naevi ≥5mm and naevi that grew or decreased in size by 20% or more were defined as changeable naevi. Associations between changeable naevi and participants' age, sex, skin type, body sites of naevi and personal and family history of melanoma were assessed. Results: There was no difference in changeable naevus rates among sex, age or skin type. Among the body sites, the head and neck were most likely to have changeable naevi, and the upper limbs the least likely. A family history of melanoma almost tripled the likelihood of having changeable naevi compared with those without both personal and family melanoma history. Conclusions: Naevi can continue to change in size throughout adulthood, showing both increases and decreases in size as well as the appearance of new naevi. This has important clinical implications, in particular for sequential body imaging used for the detection of melanoma.

Introduction: Community-based integrated care initiatives for children and families had been developed in Sydney Australia over five years. One of those is the Healthy Homses and Neighbourhoods Integrated Care (HHAN) Initiative. The HHAN design includes several sector workforce capacity building initiatives. A partnership was formed with: primary health networks (PHN), child and family nurses, practice nurses, a general practice training organisation, Sydney Children's Hospita Network and the local health district. Child health checks are conducted by Child and Family Nurses in Australia. Due to many reasons, most families do not return for their checks. However they still frequent their GPs for a range of health needs, a setting where follow up checks can be implemented and an opportunity for postgraduate learning. Theory/Methods: GP registrars were invited to participate in an eLearning program followed by a clinical skills workshop. A curriculum blueprint mapping to learning objectives underpinned the program. Content was extracted from well child check resources and developed into individual learning objects, multimedia and interactive quizzes within a blended learning platform. Results: Eighty-eight percent felt that the online program was useful, 66% felt learning objectives were fully met with 100% at least partially met. An overwhelming majority felt that the workshop reinforced knowledge gained from online modules and improved confidence in applying learnt content. More results will be presented at the conference. Discussion: Development of eLearning for general practice is a growing field. GPs are busy and often bombarded with many requirements for CPD. Ensuring that there are adequate incentives as well as instructional design that is interesting, relevant and time efficient is the mainstay of GP education. Conclusion: Learning to conduct child health checks can occur in an online setting. Blended learning opportunities should be provided where possible to consolidate specific clinical skills. There is potential for learning to occur in more remote geographical regions and for busy clinicians. Lessons learned: Designing an eLearning program for GPs need to take into consideration their work practices, IT setup and convenience in order to achieve program completion. Embedding eLearning within a CPD context provides incentives and endorsement of education standards. Limitation: The evaluation numbers were constrained by web site technical matters. Suggestions for future research Further e-Learning modules are planned as part of the district integrated care initiative. Qualitative research projects are planned to assess impact.

The use of high-cost, off-label, unsubsidised drugs has become valuable in the management of dermatology patients with challenging conditions unresponsive to conventional therapy. Currently, there is no dedicated funding and a paucity of evidence for such drugs. The aim of this audit was to review outcomes and costs.A retrospective clinical audit of high-cost off-label dermatology drug applications to the High Cost Drug's Subcommittee was undertaken at a tertiary public hospital in Brisbane, Queensland, between 2002 and 2013.Of 28 applications, 25 were approved. The medications included thalidomide, mycophenolate mofetil, cyclosporin, infliximab, rituximab and adalimumab. Over 70% of patients responded to treatment. Individual annual costs for these medications ranged from $2068 to $36 984. Adverse effects resulted in drug withdrawal in five cases.Despite the absence of dedicated funding for high-cost drugs and a rigorous committee approval process, most applications were approved, of which70% benefited from treatment. This audit provides useful clinical experience with off-label use of high-cost drugs in difficult dermatological conditions.

Naevi may change in size, shape and colour due to multiple inherent and external factors. We observed naevi changing size in adults at high risk of melanoma, and assessed associations of change with demographic factors, skin type, sites of naevi and history of melanoma.In total, 29 participants with a personal or first-degree family history of melanoma or those deemed at high risk with multiple naevi of variable morphologies had all melanocytic naevi 0.5-1 cm imaged and their maximum diameter recorded. Maximum diameters from repeat imaging of naevi 12 months later were compared to baseline measurements. Newly appearing naevi ≥5 mm and naevi that grew or decreased in size by 20% or more were defined as changeable naevi. Associations between changeable naevi and participants' age, sex, skin type, body sites of naevi and personal and family history of melanoma were assessed.There was no difference in changeable naevus rates among sex, age or skin type. Among the body sites, the head and neck were most likely to have changeable naevi, and the upper limbs the least likely. A family history of melanoma almost tripled the likelihood of having changeable naevi compared with those without both personal and family melanoma history.Naevi can continue to change in size throughout adulthood, showing both increases and decreases in size as well as the appearance of new naevi. This has important clinical implications, in particular for sequential body imaging used for the detection of melanoma.