Paediatrics (RCH) - Research Publications

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    Comparative Psychometric Performance of Common Generic Paediatric Health-Related Quality of Life Instrument Descriptive Systems: Results from the Australian Paediatric Multi-Instrument Comparison Study
    Jones, R ; O'Loughlin, R ; Xiong, X ; Bahrampour, M ; Devlin, N ; Hiscock, H ; Chen, G ; Mulhern, B ; Dalziel, K (ADIS INT LTD, 2023-11-13)
    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.
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    Comparing the Psychometric Performance of Generic Paediatric Health-Related Quality of Life Instruments in Children and Adolescents with ADHD, Anxiety and/or Depression
    O’Loughlin, R ; Jones, R ; Chen, G ; Mulhern, B ; Hiscock, H ; Devlin, N ; Dalziel, K (Adis, 2024)
    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.
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    Distinct developmental trajectories of health-related quality of life for boys and girls throughout childhood and adolescence; a national level longitudinal study
    O'Loughlin, R ; Hiscock, H ; Devlin, N ; Dalziel, K (BMC, 2023-08-01)
    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.
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    Effectiveness of Intranasal Mometasone Furoate vs Saline for Sleep-Disordered Breathing in Children A Randomized Clinical Trial
    Baker, A ; Grobler, A ; Davies, K ; Griffiths, A ; Hiscock, H ; Kubba, H ; Peters, RL ; Ranganathan, S ; Rimmer, J ; Rose, E ; Rowe, K ; Simpson, CM ; Davidson, A ; Nixon, G ; Perrett, KP (AMER MEDICAL ASSOC, 2023-03)
    IMPORTANCE: Obstructive sleep-disordered breathing (SDB) in children is characterized by snoring and difficulty breathing during sleep. SDB affects at least 12% of otherwise healthy children and is associated with significant morbidity. Evidence from small clinical trials suggests that intranasal corticosteroids improve SDB as measured by polysomnography; however, the effect on symptoms and quality of life is unclear. OBJECTIVE: To determine whether intranasal mometasone furoate is more effective than intranasal saline for improving symptoms and quality of life in children with SDB. DESIGN, SETTING, AND PARTICIPANTS: The MIST trial was a multicenter, randomized, double-blind, placebo-controlled trial, recruiting participants from June 8, 2018, to February 13, 2020. Children aged 3 to 12 years who were referred to a specialist for significant SDB symptoms were included; exclusions were previous adenotonsillectomy, body mass index greater than the 97th percentile, and severe SDB. Randomization was stratified by site, and data were analyzed on an intention-to-treat basis from October 28, 2020, to September 25, 2022. INTERVENTIONS: Participants were randomly assigned to receive mometasone furoate, 50 μg, or sodium chloride (saline), 0.9%, 1 spray per nostril daily, dispensed in identical bottles. MAIN OUTCOMES AND MEASURES: The primary outcome was resolution of significant SDB symptoms (ie, reduction to a level no longer requiring referral to a specialist as per the American Academy of Pediatrics guidelines) at 6 weeks, measured by parental report of symptoms using the SDB Score. RESULTS: A total of 276 participants (mean [SD] age, 6.1 [2.3] years; 146 male individuals [53%]) were recruited, 138 in each treatment arm. Resolution of significant SDB symptoms occurred in 56 of 127 participants (44%) in the mometasone group and 50 of 123 participants (41%) in the saline group (risk difference, 4%; 95% CI, -8% to 16%; P = .51) with 26 participants lost to follow-up and missing values managed by multiple imputation. The main adverse effects were epistaxis, affecting 12 of 124 participants (9.7%) in the mometasone group and 18 of 120 participants (15%) in the saline group, and nasal itch/irritation, affecting 12 of 124 participants (9.7%) in the mometasone group and 22 of 120 participants (18%) in the saline group. CONCLUSIONS AND RELEVANCE: Results of this randomized clinical trial suggest that there was no difference in treatment effect between intranasal mometasone and saline for the management of SDB symptoms. The results suggest that almost one-half of children with SDB could be initially managed in the primary care setting and may not require referral to specialist services, as is currently recommended. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry: ANZCTRN12618000448246.
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    Identifying and responding to family adversity in Australian community and primary health settings: a multi-site cross sectional study
    Hall, T ; Constable, L ; Loveday, S ; Honisett, S ; Schreurs, N ; Goldfeld, S ; Loftus, H ; Jones, R ; Reupert, A ; Yap, MBH ; Woolfenden, S ; Montgomery, A ; Dalziel, K ; Bailey, C ; Pringle, G ; Fisher, J ; Forell, S ; Eapen, V ; Haslam, R ; Sanci, L ; Eastwood, J ; Hiscock, H (FRONTIERS MEDIA SA, 2023-09-13)
    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.
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    Emotional work of getting help: a qualitative analysis of caregiver-perceived barriers to responding to childhood adversity
    Loveday, S ; Balgovind, M ; Hall, T ; Goldfeld, S ; Sanci, L ; Hiscock, H (BMJ PUBLISHING GROUP, 2023-10)
    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.
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    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
    Newberry-Dupe, J ; Chu, W ; Craig, S ; Borschmann, R ; O'Reilly, G ; Yates, P ; Melvin, G ; King, K ; Hiscock, H (SPRINGER, 2024-03)
    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.
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    FAILURE TO ATTEND GENERAL PAEDIATRIC OUTPATIENT CLINICS: RISK FACTORS AND LOST REVENUE COSTS
    White, M ; Noakes, K ; Hua, X ; Efron, D ; McNab, S ; Hiscock, H (WILEY, 2022-08)
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    Virtual health care for children: Parental willingness to adopt virtual health-care technologies
    Lawrence, J ; Measey, M-A ; Hoq, M ; Hiscock, H ; Rhodes, A (WILEY, 2022-08)
    AIM: To understand parental awareness and appetite for virtual health modalities, including asynchronous communication and remote monitoring. To understand which socio-demographic characteristics are associated with greater awareness and appetite for virtual health. METHODS: Nationally representative survey of Australian parents, recruited via an online panel in February 2021 as part of the Royal Children's Hospital National Child Health Poll. Participants were randomly selected from the consumer panel. RESULTS: 1981 (59.4% response rate) parents completed the survey. 39.9% were aware of virtual health care, defined by digital technology and medical devices to support remote monitoring. Higher levels of awareness were associated with being male, having previous teleconsultation experience, higher education attainment and employment. Most parents reported an appetite for asynchronous communication using an app or website to either provide information prior to a consult (65.9%), provide a photo of a rash or similar (61.7%) or receive medical advice (58.1%). Appetite for wearable devices was similar at 59.9%. CONCLUSIONS: Whilst awareness of virtual healthcare was low, appetite exists amongst Australian parents to use technology to support their child's health care. Health-care models, which incorporate asynchronous communication or symptom monitoring through apps, are likely to be acceptable and offer an accessible and sustainable alternative to traditional face-to-face health care.
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    Co-designing an Integrated Health and Social Care Hub With and for Families Experiencing Adversity
    Hall, T ; Loveday, S ; Pullen, S ; Loftus, H ; Constable, L ; Paton, K ; Hiscock, H (UBIQUITY PRESS LTD, 2023)
    INTRODUCTION: Integrated care research often fails to adequately describe co-design methods. This article outlines the process, principles and tools to co-design an integrated health and social care Hub for families experiencing adversity. RESEARCH METHODS: The Child and Family Hub was co-designed in four stages: (1) partnership building and stakeholder engagement, (2) formative research, (3) persona development and (4) co-design workshops and consultations. Local families, community members and intersectoral practitioners were engaged at each stage. The co-design workshops employed a human-centred design process and were evaluated using the Public and Patient Engagement Evaluation Tool (PEET). RESULTS: 121 family participants and 80 practitioners were engaged in the Hub's co-design. The PEET highlighted the co-design team's satisfaction achieved by community members working alongside practitioners to generate mutual learning. Resourcing was a key challenge. DISCUSSION: Human-centred design offered a systematic process and tools for integrating formative evidence with lived and professional experience in the Hub's co-design. Applying community engagement principles meant that a diverse range of stakeholders were engaged across all stages of the project which built trust in and local ownership of the Hub model. CONCLUSION: Co-design research with families experiencing adversity should attend to language, engagement methods, team composition and resourcing decisions.