The performance of the EQ-HWB-S as a measure of quality-of-life of caregivers in families that have experienced adverse events.

PURPOSE: The recently developed EQ Health and Wellbeing Instrument (EQ-HWB) is a broad, generic measure of quality-of-life designed to be suitable for caregivers. The aim of this study was to investigate performance and validity of the 9-item version (EQ-HWB-S) for caregivers where families had experienced adverse-life-events. METHODS: Using survey data from caregivers of children aged 0-8 years attending a community-health centre in 2021-2022, the general performance, feasibility, convergent and known-group validity, responsiveness-to-change, and test-retest reliability of the EQ-HWB-S was assessed. Twelve semi-structured interviews were conducted with survey respondents to assess acceptability and content validity. RESULTS: The sample included  234 caregivers at baseline (81% female, mean age 36-years, 38% Australian-born) and 190 at 6-months follow-up. Most EQ-HWB-S item responses were evenly spread, except for 'Mobility'. The instrument showed good convergent validity with psychological distress (Kessler 6 (K6)) and personal-wellbeing (PWI-A) scales. EQ-HWB-S level sum-scores and preference-weighted scores were significantly different in all known-group analyses, in expected directions, and the instrument was responsive to change. For test-retest reliability, Intraclass Correlation Coefficients were excellent and individual item Kappa scores were moderate. The instrument was well received by interviewees who found the questions clear and relevant. The items were appropriate for parents experiencing adversity and carers of children with additional needs. CONCLUSION: The EQ-HWB-S appeared valid, responsive to change, feasible, and well accepted by caregivers. By demonstrating the validity of the EQ-HWB-S in this hard-to-reach population of caregivers in families experiencing adverse events, this study adds to existing international evidence supporting its use.

Reducing unwarranted chest x-rays in bronchiolitis: Importance of a robust analysis.

AIM: Bronchiolitis is the commonest reason for hospitalisation amongst infants and is often a target for low-value care (LVC) reduction. We aimed to assess the impact of a multifaceted intervention (clinician education, parent engagement, audit-feedback) on rates of chest x-rays (CXR) in bronchiolitis. METHODS: Longitudinal study of CXRs ordered in infants (1-12 months) diagnosed with bronchiolitis in the Emergency Department (ED) of an Australian paediatric hospital between May 2016 and February 2023. We used logistic regression to measure the impact of the intervention on unwarranted CXR orders, controlling for other potential impacting variables such as time, patient characteristics (age/sex), clinical variables (fever, hypoxia, tachypnoea), seasonal factors (month, day of the week, business hours) and time passed since intervention. RESULTS: Ten thousand one hundred and nine infants were diagnosed with bronchiolitis in the ED over the study period, with 939 (9.3%) receiving a CXR, of which 69% (n = 651) were considered unwarranted. Rates of unwarranted CXRs reduced from 7.9% to 5.4% post-intervention (P < 0.0001). Logistic regression showed the intervention had no significant effect (OR 0.89, 95% CI 0.65-1.23) once other variables and underlying time-based trends were accounted for. CONCLUSIONS: Although pre-post rates appeared significantly improved, a robust analysis demonstrated that our multi-faceted intervention was not effective in reducing CXRs in bronchiolitis. The decision to order CXR was associated with clinical features that overlap with pneumonia suggesting ongoing misconceptions regarding the role of CXR for this indication. Our study highlights the value of large electronic medical record datasets and robust methodology to avoid falsely attributing underlying trends to the LVC intervention.

Comparing the Psychometric Performance of Generic Paediatric Health-Related Quality of Life Instruments in Children and Adolescents with ADHD, Anxiety and/or Depression.

OBJECTIVE: The aim of this study was to examine the validity, reliability and responsiveness of common generic paediatric health-related quality of life (HRQoL) instruments in children and adolescents with mental health challenges. METHODS: Participants were a subset of the Australian Paediatric Multi-Instrument Comparison (P-MIC) study and comprised 1013 children aged 4-18 years with attention-deficit/hyperactivity disorder (ADHD) (n = 533), or anxiety and/or depression (n = 480). Participants completed an online survey including a range of generic paediatric HRQoL instruments (PedsQL, EQ-5D-Y-3L, EQ-5D-Y-5L, CHU9D) and mental health symptom measures (SDQ, SWAN, RCADS-25). A subset of participants also completed the HUI3 and AQoL-6D. The psychometric performance of each HRQoL instrument was assessed regarding acceptability/feasibility; floor/ceiling effects; convergent validity; known-group validity; responsiveness and test-retest reliability. RESULTS: The PedsQL, CHU9D, EQ-5D-Y-3L and EQ-5D-Y-5L showed similarly good performance for acceptability/feasibility, known-group validity and convergent validity. The CHU9D and PedsQL showed no floor or ceiling effects and fair-good test-retest reliability. Test-retest reliability was lower for the EQ-5D-Y-3L and EQ-5D-Y-5L. The EQ-5D-Y-3L showed the highest ceiling effects, but was the top performing instrument alongside the CHU9D on responsiveness to improvements in health status, followed by the PedsQL. The AQoL-6D and HUI3 showed good acceptability/feasibility, no floor or ceiling effects, and good convergent validity, yet poorer performance on known-group validity. Responsiveness and test-retest reliability were not able to be assessed for these two instruments. In subgroup analyses, performance was similar for all instruments for acceptability/feasibility, known-group and convergent validity, however, relative strengths and weaknesses for each instrument were noted for ceiling effects, responsiveness and test-retest reliability. In sensitivity analyses using utility scores, performance regarding known-group and convergent validity worsened slightly for the EQ-5D-Y-3L and CHU9D, though improved slightly for the HUI3 and AQoL-6D. CONCLUSIONS: While each instrument showed strong performance in some areas, careful consideration of the choice of instrument is advised, as this may differ dependent on the intended use of the instrument, and the age, gender and type of mental health condition of the population in which the instrument is being used. TRIAL REGISTRATION: ANZCTR-ACTRN12621000657820.

Why Parents Do Not Use Digital Health Interventions for Their Child's Mental Health?

There are free, evidence-based Digital Health Interventions (DHIs) that can help children's mental health, but few parents use them. We sought to understand what influenced uptake of DHIs by parents of children aged 2-12 years old with a mental health problem. We interviewed parents and analysed data using inductive content analysis. Four factors emerged: i) personal capacity; ii) awareness of DHIs and where to find one; iii) credibility, including trust and endorsement from experts; and iv) the suitability of a DHI to their child's specific problem and level of need. Incorporating these themes into the design of future DHIs may improve uptake.

Psychometric Performance Comparison of the Adapted versus Original Versions of the EQ-5D-Y-3L and -Y-5L in Proxy Respondents for 2- to 4-Year-Olds.

INTRODUCTION: Few preference-weighted instruments are available to measure health-related quality of life in young children (2-4 years of age). The EQ-5D-Y-3L and EQ-5D-Y-5L were recently modified for this purpose. OBJECTIVE: The aim of this study was to test the psychometric properties of these adapted versions for use with parent proxies of children aged 2-4 years and to compare their performance with the original versions. It was hypothesised that the adapted instrument wording would result in improved psychometric performance. METHODS: Survey data of children aged 2-4 years were obtained from the Australian Paediatric Multi-Instrument Comparison study. Distributional and psychometric properties tested included feasibility, convergence, distribution of level scores, ceiling effects, known-group validity (Cohen's D effect sizes for prespecified groups defined by the presence/absence of special healthcare needs [SHCNs]), test-retest reliability (intraclass correlation coefficients [ICCs]), and responsiveness (standardised response mean [SRM] effect sizes for changes in health). Level sum scores were used to provide summary outcomes. Supplementary analysis using utility scores (from the Swedish EQ-5D-Y-3L value set) were conducted for the adapted and original EQ-5D-Y-3L, and no value sets were available for the EQ-5D-Y-5L. RESULTS: A total of 842 parents of children aged 2-4 years completed the survey. All instruments were easy to complete. There was strong convergence between the adapted and original EQ-5D-Y-3L and EQ-5D-Y-5L. The adapted EQ-5D-Y-3L and adapted EQ-5D-Y-5L showed more responses in the severe levels of the five EQ-5D-Y dimensions, particularly in the usual activity and mobility dimensions (EQ-5D-Y-5L: mobility level 1: adapted n = 478 [83%], original n = 253 [94%]; mobility level 4/5: adapted n = 17 [2.9%], original n = 4 [1.5%)]). The difference in the distribution of responses was more evident in children with SHCNs. Assessment of known-group validity showed a greater effect size for the adapted EQ-5D-Y-3L and adapted EQ-5D-Y-5L compared with the original instruments (EQ-5D-Y-5L: adapted Cohen's D = 1.01, original Cohen's D = 0.83) between children with and without SHCNs. The adapted EQ-5D-Y-3L and adapted EQ-5D-Y-5L showed improved reliability at 4-week follow-up, with improved ICCs (EQ-5D-Y-5L: adapted ICC = 0.83, original ICC = 0.44). The responsiveness of all instruments moved in the hypothesised direction for better or worse health at follow-up. Probability of superiority analysis showed little/no differences between the adapted and original EQ-5D-Y-3L and EQ-5D-Y-5L. Supplementary psychometric analysis of the adapted and original EQ-5D-Y-3L using utilities showed comparable findings with analyses using level sum scores. CONCLUSIONS: The findings suggest improved psychometric performance of the adapted version of the EQ-5D-Y-3L and EQ-5D-Y-5L in children aged 2-4 years compared with the original versions.

The Validity of the EuroQol Health and Wellbeing Short Version (EQ-HWB-S) Instrument in Parents of Children With and Without Health Conditions.

BACKGROUND:  The EuroQol Health and Wellbeing Short Version (EQ-HWB-S) instrument has been developed to measure the health and wellbeing of care-recipients and their caregivers for use in economic evaluation.The EQ-HWB-S has nine items, and pilot UK preference weights have now been developed. OBJECTIVE: We aimed to investigate the validity of the instrument in parents of children with and without health conditions. METHODS: EQ-HWB-S data were sourced from an Australian paediatric multi-instrument comparison study. We analysed the baseline characteristics and response distribution of the EQ-HWB-S items. Assessment of known-group validity was conducted for EQ-HWB-S items, level sum-scores and preference-weighted scores, including partial effects. Known-group analyses included three child health variables and where caregivers reported coronavirus disease 2019 (COVID-19) had impacted their wellbeing. We included analyses across gender, controlled for child and parent demographic variables, and compared scores across child health conditions. RESULTS:  Item responses were distributed as expected, with higher skew for mobility and activities. Parents experienced high levels of exhaustion. We detected significant differences between groups for level sum-scores and preference-weighted scores, as hypothesised; all tests were significant (p < 0.001), with moderate effect sizes (effect sizes were slightly higher for female than male parents). The regression analysis identified significantly different EQ-HWB-S scores for child health samples compared with the general population after controlling for demographic variables. Differences were observed between child health conditions. CONCLUSION: The EQ-HWB-S is a useful instrument to measure parent quality of life for economic evaluation in this population. Data were limited to one time point; further research should investigate the instrument's sensitivity to change and test-retest reliability in this population.

Retrospective analysis of the impact of electronic medical record alerts on low value care in a pediatric hospital.

OBJECTIVES: Hospital costs continue to rise unsustainably. Up to 20% of care is wasteful including low value care (LVC). This study aimed to understand whether electronic medical record (EMR) alerts are effective at reducing pediatric LVC and measure the impact on hospital costs. MATERIALS AND METHODS: Using EMR data over a 76-month period, we evaluated changes in 4 LVC practices following the implementation of EMR alerts, using time series analysis to control for underlying time-based trends, in a large pediatric hospital in Australia. The main outcome measure was the change in rate of each LVC practice. Balancing measures included the rate of alert adherence as a proxy measure for risk of alert fatigue. Hospital costs were calculated by the volume of LVC avoided multiplied by the unit costs. Costs of the intervention were calculated from clinician and analyst time required. RESULTS: All 4 LVC practices showed a statistically significant reduction following alert implementation. Two LVC practices (blood tests) showed an abrupt change, associated with high rates of alert adherence. The other 2 LVC practices (bronchodilator use in bronchiolitis and electrocardiogram ordering for sleeping bradycardia) showed an accelerated rate of improvement compared to baseline trends with lower rates of alert adherence. Hospital savings were $325 to $180 000 per alert. DISCUSSION AND CONCLUSION: EMR alerts are effective in reducing pediatric LVC practices and offer a cost-saving opportunity to the hospital. Further efforts to leverage EMR alerts in pediatric settings to reduce LVC are likely to support future sustainable healthcare delivery.

Paediatric diabetes-related presentations to emergency departments in Victoria, Australia from 2008 to 2018.

OBJECTIVES: Despite significant treatment advances in paediatric diabetes management, ED presentations for potentially preventable (PP) complications such as diabetic ketoacidosis (DKA) remains a major issue. We aimed to examine the characteristics, rates and trends of diabetes-related ED presentations and subsequent admissions in youth aged 0-19 years from 2008 to 2018. METHODS: Data were obtained from the Victorian Emergency Minimum Dataset and the National Diabetes Register. A diabetes-related ED presentation is defined using the International Statistical Classification of Diseases and Related Health Problems, Tenth Revision, Australian Modification diagnosis codes. 'Non-preventable' presentations were the number of youths with newly diagnosed diabetes, and the remaining are classified as PP diabetes-related presentations. Poisson regression model was used to examine the trends in incidence rate and prevalence. RESULTS: Four thousand eight hundred and seventy-two (59%) of 8220 presentations were PP, 4683 (57%) were for DKA whereas 6200 (82%) required hospital admission. Diabetes-related ED presentations decreased from 38.4 to 27.5 per 100 youth with diabetes per year between 2008 and 2018 (ß = -0.04; confidence interval [CI] -0.04 to -0.03; P < 0.001). Females, those aged 0-4 years and rural youth had higher rates of ED presentations than males, older age groups and metropolitan youth. DKA presentations decreased from 20.1 presentations per 100 youth with diabetes in 2008-2009 to 14.9 presentations per 100 youth with diabetes in 2017-2018. The rate of DKA presentations was 68% higher in rural areas compared to metropolitan areas (incidence rate ratio 1.68; CI 1.59-1.78; P < 0.001). CONCLUSIONS: Although the rates of diabetes-related ED presentations declined, PP diabetes-related presentations and subsequent hospitalisation remain high. Patient level research is required to understand the increased DKA presentations in rural youth.

Adult Mental Health Presentations to Emergency Departments in Victoria, Australia between January 2018 and October 2020: Changes Associated with COVID-19 Pandemic Public Health Restrictions.

The COVID-19 pandemic and associated public health measures altered patterns of help-seeking for mental health, with increases in emergency department utilisation reported. We examined the association between COVID-19 restrictions and adult emergency department (ED) mental health presentations in Victoria, Australia, through secondary analysis of data from 39 public EDs across the state. Participants were all patients (18+ years) presenting between 1 January 2018 and 31 October 2020 with mental health or intentional self-harm. The main outcome was number of presentations for each mental health condition, by patient age, socioeconomic status (SES), location, and ED triage category. We used a Poisson regression model to compare predicted monthly ED presentations based on trends from 2018, 2019 and 2020 (up to 31 March), with observed presentations during the initial months of the COVID-19 pandemic (1 April to 31 October 2020). There was an average of 4,967 adult mental health presentations per month pre-COVID-19 (1 January-31 March 2020) and 5,054 per month during the COVID-19 period (1 April-31 October 2020). Compared to predicted incidence, eating disorder presentations increased 24.0% in the COVID-19 period, primarily among higher SES females aged 18-24 years. Developmental/behavioural disorder presentations decreased by 19.7% for all age groups. Pandemic restrictions were associated with overall increases in monthly adult ED presentations for mental health, with some disorders increasing and others decreasing. Accessibility of acute mental health services needs to be addressed to meet changing demand and ensure services are responsive to changes in presentations resulting from future public health challenges.

Comparative Psychometric Performance of Common Generic Paediatric Health-Related Quality of Life Instrument Descriptive Systems: Results from the Australian Paediatric Multi-Instrument Comparison Study.

OBJECTIVE: The aim of this study was to compare the psychometric performance of common generic paediatric health-related quality-of-life instrument descriptive systems (PedsQL generic core 4.0, EQ-5D-Y-3L, EQ-5D-Y-5L, Child Health Utility 9D [CHU9D], Assessment of Quality of Life 6D [AQoL-6D], and Health Utilities Index Mark 3 [HUI3]) by child age, report type, and health status. METHODS: Data for children aged 5-18 years were from the Australian Paediatric Multi-Instrument Comparison study. Ceiling effects, test-retest reliability, known-group validity, convergent and divergent validity, and responsiveness were assessed in the total sample and by child age (5-12 years vs 13-18 years), report type (self- vs proxy report), and health status. Instruments were scored using an exploratory level sum score (LSS) approach. RESULTS: Survey data were available for 5945 children, with follow-up data available for 2346 children. The EQ-5D-Y-3L demonstrated ceiling effects. The PedsQL, EQ-5D-Y-3L, EQ-5D-Y-5L, and CHU9D demonstrated acceptable test-retest reliability. All instruments demonstrated known-group, convergent, and divergent validity. The EQ-5D-Y-3L, EQ-5D-Y-5L, and CHU9D demonstrated responsiveness to improvements in health and the PedsQL, EQ-5D-Y-3L, EQ-5D-Y-5L, and CHU9D to worsening health. The AQoL-6D and HUI3 had inconclusive test-retest reliability and responsiveness evidence due to small sample size. Importantly, ceiling effects, test-retest reliability and responsiveness varied by subgroup. CONCLUSION: Results reflect instrument performance using LSSs, which may differ to utility scores. In the total sample, the EQ-5D-Y-5L and CHU9D descriptive systems demonstrated evidence of good performance (i.e., meeting prespecified criteria) across all psychometric attributes tested. Performance varied by child age and report type, indicating room for considerations by population and study.

Collecting Paediatric Health-Related Quality of Life Data: Assessing the Feasibility and Acceptability of the Australian Paediatric Multi-Instrument Comparison (P-MIC) Study.

BACKGROUND: Collecting data using paediatric health-related quality of life (HRQoL) instruments is complex, and there is a paucity of evidence regarding the comparative performance of paediatric HRQoL instruments. The Australian Paediatric Multi-Instrument Comparison (P-MIC) study was conducted to address this paucity of evidence. This study aims to understand the (1) feasibility of collecting data using paediatric HRQoL instruments in a research setting and (2) acceptability and feasibility for children and their caregivers to complete common paediatric HRQoL instruments using data from the Australian P-MIC study. METHODS: Data were from children aged 5-18 years from the Australian P-MIC study. Demographics, cost and time for data collection, dropout rates, and inconsistent responses were used to assess Aim 1. Participant-reported difficulty and completion time were used to assess Aim 2. Subgroup analyses included child age, report type (self/proxy), sample recruitment pathway (hospital/online), and online panel sample type (general population/condition groups). RESULTS: Overall, 5945 P-MIC participants aged 5-18 years completed an initial survey, of these, 2346 also completed the follow-up survey (39.5% response rate). Compared with online panel recruitment, hospital recruitment was more costly and time-consuming and had higher follow-up completion (33.5% versus 80.4%) (Aim 1). Data were of similar good quality (based on inconsistent responses) for both recruitment pathways (Aim 1). Participants completed each instrument in <3 min, on average, and >70% reported each instrument as easy to complete (Aim 2). CONCLUSIONS: The Australian P-MIC study was able to collect good-quality data using both online panel and hospital recruitment pathways. All instruments were acceptable and feasible to children and their caregivers.

Identifying and responding to family adversity in Australian community and primary health settings: a multi-site cross sectional study.

Background: Unaddressed family adversity has potentially modifiable, negative biopsychosocial impacts across the life course. Little is known about how Australian health and social practitioners identify and respond to family adversity in community and primary health settings. Objective: To describe, in two Australian community health services: (1) the number of adversities experienced by caregivers, (2) practitioner identification of caregivers experiencing adversity, (3) practitioner response to caregivers experiencing adversity, and (4) caregiver uptake of referrals. Methods: Survey of caregivers of children aged 0-8 years attending community health services in Victoria and New South Wales (NSW). Analysis described frequencies of caregiver self-reported: (1) experiences of adversity, (2) practitioner identification of adversity, (3) practitioner response to adversity, and (4) referral uptake. Analyses were sub-grouped by three adversity domains and site. Results: 349 caregivers (Victoria: n = 234; NSW: n = 115) completed the survey of whom 88% reported experiencing one or more family adversities. The median number of adversities was 4 (2-6). Only 43% of participants were directly asked about or discussed an adversity with a practitioner in the previous 6 months (Victoria: 30%; NSW: 68%). Among caregivers experiencing adversity, 30% received direct support (Victoria: 23%; NSW: 43%), and 14% received a referral (Victoria: 10%; NSW: 22%) for at least one adversity. Overall, 74% of caregivers accepted referrals when extended. Conclusion: The needs of Australian families experiencing high rates of adversity are not systematically identified nor responded to in community health services. This leaves significant scope for reform and enhancement of service responses to families experiencing adversity.

Distinct developmental trajectories of health-related quality of life for boys and girls throughout childhood and adolescence; a national level longitudinal study.

BACKGROUND: To identify and describe distinct developmental trajectories of health-related quality of life (HRQoL) in a national level Australian population sample, overall and separately for boys and girls. METHODS: Data were from the Longitudinal Study of Australian Children (LSAC). Participants were children aged 4-5 years recruited in 2004 and followed through to age 16-17 years in 2016, and their caregivers. Group-based trajectory modelling was used to identify groups of children that follow qualitatively distinct developmental trajectories of HRQoL. RESULTS: Three distinct trajectories were identified for the total sample: (1) high-stable (52.2% of children); (2) middle-stable (38.0%); and (3) low-declining (9.8%). These trajectories differed for boys, who saw increasing HRQoL in the highest trajectory group; a middle-stable trajectory; and declining and rebounding HRQoL in the lowest trajectory group. In contrast, girls saw no increasing or rebounding trajectories; approximately half of girls had high-stable HRQoL and the remaining half had either steadily or rapidly declining HRQoL from age 4-5 to 16-17 years. CONCLUSIONS: Our results highlight the importance of considering the distinct trajectories for girls and boys and not relying on population mean levels of HRQoL for decision-making. The presence of developmentally distinct trajectories of HRQoL, and differences in the trajectories faced by boys and girls, should be considered when assessing the effectiveness of treatments and interventions impacting upon HRQoL throughout childhood and adolescence. Failure to account for these pre-existing trajectories may over- or under-estimate treatment effects.

Impact of an Intervention to Reduce Bronchodilator Use in Bronchiolitis - A Time Series Analysis.

BACKGROUND AND OBJECTIVES: International guidelines recommend against the use of bronchodilators in bronchiolitis. Despite attempts to address low value care practices in pediatrics, the literature is still evolving regarding which interventions are most effective in low value care reduction. We aim to assess the impact of a multifaceted intervention on rates of bronchodilator prescription in bronchiolitis. METHODS: With electronic medical record (EMR) data over a 76- month period, we evaluated changes in bronchodilator prescription among infants aged 1 to 12 months diagnosed with bronchiolitis, using interrupted time series analysis, controlling for preintervention prescribing trends. The setting was the emergency department of a large teaching pediatric hospital. The intervention included education, clinician audit-feedback, and an EMR alert, implemented February 2019. The main outcome measure was rate of bronchodilator prescription per month. RESULTS: There were 9576 infants, aged 1 to 12 months, diagnosed in the emergency department with bronchiolitis over the study period. Bronchodilator ordering reduced from 6.9% to 3.2% after the intervention. Once underlying trends were accounted for, the multifaceted intervention was associated with a reduction in the rate of prescribing (inter-rater reliability 0.98, 95% confidence interval 0.96 to 0.99, P = .037). CONCLUSIONS: We found that the multifaceted intervention, including an EMR alert, may be an effective method of reducing low value care prescribing in bronchiolitis, accelerating the reduction of unnecessary care and supporting sustainable change.

Emotional work of getting help: a qualitative analysis of caregiver-perceived barriers to responding to childhood adversity.

OBJECTIVE: To explore caregivers' experiences and challenges of accessing help for adversity across both health and social care sectors. DESIGN: Qualitative study design using semistructured interviews to explore how caregivers accessed services across health and social care. Interviews were audio recorded, transcribed verbatim and analysed using reflexive thematic analysis. SETTING: Families living in the city of Wyndham, Victoria, Australia. PARTICIPANTS: 17 caregivers of children aged 0-8 years. RESULTS: Five main themes emerged. (1) Emotional work of getting help. Caregivers described that getting help for life challenges was both emotionally taxing and effortful. (2) Trusting relationships are key. Engagement was related to the degree of relational practice and whether they felt judged or demeaned. (3) Wanting to manage on your own. There was a strong desire by caregivers to be independent and to only seek help when it was absolutely necessary. (4) Importance of knowing help was available and how to access it. (5) Overcoming service access barriers including long waiting times, restricted service criteria, transport issues and out-of-pocket expenses. CONCLUSIONS: Caregivers highlighted a multitude of barriers to getting help for life challenges. Addressing these barriers will require services to become more flexible and codesign best approaches with families in ongoing partnership. Improving community knowledge of available services and building trusting relationships is the first step to overcoming these barriers.

Variation in sleep profiles in children with ADHD and associated clinical characteristics.

BACKGROUND: Sleep difficulties are common in children with attention-deficit/hyperactivity disorder (ADHD). However, sleep problems are multifaceted and little is known about the variation in sleep difficulties across children with ADHD. We examined the profiles of sleep difficulties in children with ADHD and associated clinical factors (e.g. co-occurring mental health conditions, stimulant use and parent mental health). METHODS: Data from two harmonised studies of children with ADHD (total: N = 392, ages 5-13 years) were used. Parents completed measures of children's sleep, co-occurring mental health conditions and their own mental health. Both parents and teachers completed measures of child ADHD symptoms and emotional and conduct symptoms. Latent profile analysis was used to identify sleep profiles, and multinomial logistic regression assessed clinical correlates of the groups. RESULTS: Five sleep profiles were identified: (a) insomnia/delayed sleep phase (36%), (b) generalised sleep difficulties at sleep onset and overnight (25%), (c) high anxious/bedtime resistance difficulties (11%), (d) overnight sleep difficulties including obstructive sleep apnoea and parasomnias (5%) and (e) no sleep difficulties (22%). Compared with the group without sleep difficulties, the generalised, anxious/bedtime resistance and insomnia/delayed sleep phase sleep had greater parent-reported emotional and conduct symptoms, co-occurring anxiety and increased parent mental health difficulties. The generalised and anxious/bedtime resistance groups also had greater parent-reported ADHD symptoms, with the anxious/bedtime resistance sleep group also having more frequent co-occurring depression and teacher-reported emotional symptoms. CONCLUSIONS: The sleep difficulties experienced by children with ADHD are varied. Supports to help children with ADHD need to consider the particular profiles of sleep difficulties experienced and broader clinical characteristics. Tailored intervention approaches are likely needed (including a need to address parent mental health).