Moving from idea to reality: The barriers and enablers to implementing Child and Family Hubs policy into practice in NSW, Australia.

BACKGROUND: Adverse childhood experiences can impact physical and mental health throughout the lifespan. To support families experiencing adversity and improve child health and developmental equity, an integrated, multi-sector response is required. Child and Family Hubs (Hubs) are a feasible and acceptable approach to providing such a response. In the Australian context, a number of federal and New South Wales (NSW) state policies support an integrated, multi-sector response using Hubs to support families experiencing adversity. This study examined NSW policy stakeholder and health service manager perspectives on the barriers and enablers to translating policy into practice in the implementation of Child and Family Hubs. METHODS: Semi-structured interviews were conducted with 11 NSW government policy stakeholders and 13 community health service managers working in child and family policy and planning or child and family community-based services. Interviews were of 30-60 min duration and explored stakeholder knowledge, perspectives and experiences around childhood adversity, and barriers and enablers to operationalizing policies supporting Hubs. Analysis of barriers and facilitators to implementation of Hub models of care was undertaken using the Consolidated Framework for Implementation Research (CFIR). RESULTS: Key barriers that emerged included short-term and inconsistent funding, lack of resourcing for a Hub co-ordinator, limited support for evaluation and insufficient time to plan for Hub implementation. Key enablers included flexibility and adaptability of Hub models to meet local needs, formal change management processes, strong governance structures and engagement among Hub practitioners. Key insights included the importance of targeted strategies to support sustained individual practice change and the need for organization-wide commitment to enable the successful adoption and maintenance of the Hub model of care. CONCLUSIONS: This study provides valuable insights and contributes evidence around what is needed to strengthen and support the operationalization and scalability of the Hub model of care. Key recommendations for Hub practitioners include the importance of formal change management processes and establishment of strong governance structures, while key recommendations for policymakers include the need for sustainable Hub funding and a standardized, evidence-based framework to support Hub implementation and evaluation.

Opening Pandora's box - key facilitators of practice change in detecting and responding to childhood adversity - a practitioner perspective.

BACKGROUND: Childhood adversities worsen physical and mental health across the lifespan. Health and social care practitioners play a key role in identifying and responding to childhood adversity, however, may be reluctant to do so due to a perceived lack of services to refer to, time pressures and a deficit of training and confidence. We aimed to (1) quantify changes in practitioner comfort and confidence to identify and respond to childhood adversity following a multimodal intervention within an integrated child and family health and social care hub and (2) to understand barriers and facilitators of practice change. METHODS: Hub practitioners were surveyed about their competence and comfort to directly ask about and confidence to respond to adversity at baseline and then at six and twelve months post training. Interviews were undertaken to explore practitioner barriers and enablers of practice change. Interviews were recorded, transcribed verbatim, and analysed using reflexive thematic analysis. The theoretical domains framework was used to identify the key drivers of practice change. RESULTS: Fifteen of 18 practitioners completed all three surveys and 70% reported increased competence and comfort to directly ask, and confidence to respond across a range of adversities over the 12-month intervention. Twenty-one practitioners completed interviews. Six themes were identified as either facilitators or barriers to practice change. Facilitator themes included (1) connection matters, (2) knowledge provides assurance, (3) confidence in ability and (4) choosing change. Barrier themes were (1) never enough time and (2) opening Pandora's box. Following analysis, key drivers of practice change were 'social influence', 'belief in capability', 'knowledge' and 'behaviour regulation' while barriers to practice change were 'environmental context and resources' and 'emotion'. CONCLUSIONS: Practitioners reported improved confidence in identifying and responding to adversity through a multimodal intervention delivered in an integrated Child and Family Hub. Changing practice requires more than just education and training. Opportunities for social connection and coaching to improve self-confidence and perceived competence are needed to overcome the fear of opening Pandora's box.

Potential bed-day savings and caregiver perspectives of transitioning hospital-level management of infants with bronchiolitis to the home: a mixed-methods study.

OBJECTIVE: Home management of infants admitted to hospital with bronchiolitis would alleviate pressure on hospital beds. We aim to understand the proportion of children requiring active care interventions (ie, oxygen, fluids), caregiver perspectives and potential impact of transitioning hospital-level care of infants with bronchiolitis to home. METHODS: This is a mixed-methods study in an Australian tertiary paediatric hospital. Semistructured interviews with caregivers of infants with bronchiolitis focused on attitudes towards managing bronchiolitis at home. Interviews were analysed using inductive thematic analysis. Data on bronchiolitis admissions among infants aged 1-12 months were extracted from the electronic medical record from April 2016 to October 2020. Potential bed-days saved were calculated. RESULTS: 18 parents were interviewed, with themes emerging of 'hospital is safe', 'hospital incurs costs' and 'knowledge is power'. During 4.5 years, 2367 infants were admitted to hospital with bronchiolitis: a total of 4557 bed-days. Of these, 40% of infants were admitted for monitoring alone, 25% for nasogastric fluid support, 17% for oxygen therapy and 7.5% for both fluids and oxygen. 11% received treatments not currently feasible at home (high-flow oxygen, intravenous fluids). Oxygen therapy accounted for the largest number of bed-days (242 bed-days/year). CONCLUSION: Managing bronchiolitis at home could have a substantial impact on hospital bed demand, with an estimated 344 bed-days saved per year if all interventions were offered. Parent willingness to transfer to home balances the perceived safety of the hospital versus the financial, logistic and emotional costs. Empowering parents with knowledge was seen as a substantial facilitator of supporting transition to the home.

Sleeping Sound Autism Spectrum Disorder (ASD): Cost-Effectiveness of a Brief Behavioural Sleep Intervention in Primary School-Aged Autistic Children.

Disordered sleep is common in autistic children. This study aimed to evaluate the cost-effectiveness of a brief behavioural sleep intervention, the 'Sleeping Sound intervention', in primary school-aged autistic children in Australia. A cost-effectiveness analysis was undertaken alongside a randomised controlled trial over a 6-month follow-up period from both a societal and healthcare sector perspective. Resources used by participants were collected from a resource-use questionnaire and administrative data; intervention costs were determined from study records. Mean costs and quality-adjusted life-years (QALYs) were compared between the intervention and treatment as usual (TAU) groups. Uncertainty analysis using bootstrapping and sensitivity analyses were conducted. The sample included 245 children, with 123 participants randomised to the intervention group and 122 to TAU. The mean total costs were higher for the Sleeping Sound intervention with a mean difference of A$745 (95% CI 248; 1242; p = 0.003) from a healthcare sector perspective and A$1310 (95% CI 584; 2035, p < 0.001) from a societal perspective. However, the intervention also resulted in greater QALYs compared with TAU, with a mean difference of 0.038 (95% CI 0.004; 0.072; p = 0.028). The incremental cost-effectiveness ratio was A$24,419/QALY (95% CI 23,135; 25,703) from a healthcare sector perspective and A$41,922/QALY (95% CI 39,915; 43,928) from a societal perspective; with a probability of being cost-effective of 93.8% and 74.7%, respectively. Findings remained robust in the sensitivity analyses. The Sleeping Sound intervention offers a cost-effective approach in improving sleep in primary school-aged autistic children.Trial registration The trial was registered with the International Trial Registry (ISRCTN14077107).

Advancing integrated paediatric care in Australian general practices: Qualitative insights from the SC4C GP-paediatrician model of care.

The Strengthening Care for Children (SC4C) is a general practitioner (GP)-paediatrician integrated model of care that consists of co-consulting sessions and case discussions in the general practice setting, with email and telephone support provided by paediatricians to GPs during weekdays. This model was implemented in 21 general practices in Australia (11 Victoria and 10 New South Wales). Our study aimed to identify the factors moderating the implementation of SC4C from the perspectives of GPs, general practice personnel, paediatricians and families. We conducted a qualitative study as part of the mixed-methods implementation evaluation of the SC4C trial. We collected data through virtual and in-person focus groups at the general practices and phone, virtual and in-person interviews. Data was analysed using an iterative hybrid inductive-deductive thematic analysis. Twenty-one focus groups and thirty-seven interviews were conducted. Overall, participants found SC4C acceptable and suitable for general practices, with GPs willing to learn and expand their paediatric care role. GPs cited improved confidence and knowledge due to the model. Paediatricians reported an enhanced understanding of the general practice context and the strain under which GPs work. GPs and paediatricians reported that this model allowed them to build trust-based relationships with a common goal of improving care for children. Additionally, they felt some aspects, including the lack of remuneration and the work and effort required to deliver the model, need to be considered for the long-term success of the model. Families expressed their satisfaction with the shared knowledge and quality of care jointly delivered by GPs and paediatricians and highlighted that this model of care provides easy access to specialty services without out-of-pocket costs. Future research should focus on finding strategies to ensure the long-term Implementation of this model of care with a particular focus on the individual stressors in general practices.

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.

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.

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.

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.

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.

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.

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.