Paediatrics (RCH) - Research Publications
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ItemComparative Psychometric Performance of Common Generic Paediatric Health-Related Quality of Life Instrument Descriptive Systems: Results from the Australian Paediatric Multi-Instrument Comparison Study(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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ItemComparing the Psychometric Performance of Generic Paediatric Health-Related Quality of Life Instruments in Children and Adolescents with ADHD, Anxiety and/or Depression(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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ItemDistinct developmental trajectories of health-related quality of life for boys and girls throughout childhood and adolescence; a national level longitudinal study(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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ItemThe relationship between physical and mental health multimorbidity and children's health-related quality of life(SPRINGER, 2022-07)PURPOSE: To examine the relationships between physical health problems, and borderline or clinical levels of mental health symptoms and children's health-related quality of life (HRQoL). METHODS: Data were from the Longitudinal Study of Australian Children (2004-2018). Parents reported on their child's HRQoL (PedsQL), physical health problems and mental health symptoms (Strengths and Difficulties Questionnaire, SDQ). A pooled cross-sectional analysis using linear regressions examined the relationships between physical health and clinical/borderline mental health symptoms, individually and when multi-morbid, and children's HRQoL, and whether these relationships vary by a range of child, family and social factors. RESULTS: The sample comprised 47,567 observations of children aged 4-17 years. Borderline and clinical levels of mental health symptoms were associated with significantly lower HRQoL, equal to more than two-times (10.5 points) and more than three-times (16.8 points) the clinically meaningful difference, respectively. This was a larger difference than that associated with physical health problems (4.4 points). We found a significant interaction effect between physical health problems and clinical mental health symptoms which was associated with even poorer HRQoL after accounting for the individual relationships of both problems. Mental health problems were associated with poorer HRQoL for older versus younger children; and the interaction effect was significant for boys but not girls. CONCLUSION: Findings highlight the importance of identifying and addressing mental health symptoms in children of all ages, even if these problems do not meet formal clinical criteria. Particular attention should be paid to the mental health and HRQoL of children with physical-mental multimorbidity, who are at risk of disproportionately poorer HRQoL.
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ItemPsychometric Performance of HRQoL Measures: An Australian Paediatric Multi-Instrument Comparison Study Protocol (P-MIC)(MDPI, 2021-08)BACKGROUND: There is a lack of psychometric evidence about pediatric health-related quality of life (HRQoL) instruments. Evidence on cost effectiveness, involving the measurement of HRQoL, is used in many countries to make decisions about pharmaceuticals, technologies, and health services for children. Additionally, valid instruments are required to facilitate accurate outcome measurement and clinical decision making. A pediatric multi instrument comparison (P-MIC) study is planned to compare the psychometric performance and measurement characteristics of pediatric HRQoL instruments. METHODS: The planned P-MIC study will collect data on approximately 6100 Australian children and adolescents aged 2-18 years via The Royal Children's Hospital Melbourne and online survey panels. Participants will complete an initial survey, involving the concurrent collection of a range of pediatric HRQoL instruments, followed by a shorter survey 2-8 weeks later, involving the collection of a subset of instruments from the initial survey. Children aged ≥7 years will be asked to self-report HRQoL. Psychometric performance will be assessed at the instrument, domain, and item level. CONCLUSIONS: This paper describes the methodology of the planned P-MIC study, including benefits, limitations, and likely challenges. Evidence from this study will guide the choice of HRQoL measures used in clinical trials, economic evaluation, and other applications.
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Item'Getting to clinic study': A mixed methods study of families who fail to attend hospital outpatient clinics(WILEY, 2020-04)AIM: Non-attendance rates at paediatric hospital outpatient clinics are high; however, parent-reported reasons for non-attendance are poorly understood. We aimed to identify: (i) modifiable system and parent factors that prevent parents from attending paediatric outpatient clinic appointments with their child; and (ii) parent views on changes that could be made to reduce non-attendance. METHODS: Interviews were conducted with a random sample of parents of children aged 0-18 years who did not attend scheduled new or review outpatient clinic appointments at a metro, tertiary children's hospital in Melbourne, between 1 May and 31 July 2017. Families were excluded if the principal investigator had previously cared for the child in clinic. RESULTS: A total of 50 parents completed an interview. Common factors related to non-attendance were reported as not receiving an appointment letter (n = 13, 26%) or text reminder (n = 16, 32%); and difficulties making changes to scheduled appointments (n = 11, 22%). Parents suggested a number of ways hospitals could reduce non-attendance, including flexible clinic times, reduced waiting periods, cheaper parking, consistent text reminders of upcoming appointment and, overwhelmingly, the ability to reschedule via text, removing the need to telephone the hospital. CONCLUSIONS: The principal reasons families struggle to attend appointments is being unaware of appointments, not receiving letters or text reminders. The lack of correct contact details held by the hospital's electronic medical record suggest systems errors in communication are impacting attendance rates of children in the clinics, and that addressing these internal issues may increase clinic attendance rates.
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ItemParent perspectives on children and young people's mental health services in Victoria - What's wrong and how to fix it: A multi-site qualitative study(WILEY, 2020-07)AIM: The number of children and young people presenting to emergency departments (EDs) with anxiety and depression is increasing. We aimed to determine parent perspectives on: (i) barriers to accessing non-ED mental health services; and (ii) improving access in the paediatric mental health service system. METHODS: Qualitative study with parents of children and young people aged 0-19 years who attended one of four EDs across Victoria between October 2017 and September 2018 and received a primary diagnosis of anxiety or depression. EXCLUSION CRITERIA: child or young person without a parent/guardian, or presented with self-harm or suicide attempt. Eligible participants completed semi-structured phone interviews. Interviews were recorded and transcripts were coded and analysed using content analysis. RESULTS: A total of 72 parents completed interviews. The average child age was 14 years (standard deviation 2.5) and two thirds identified as female (64%). A total of 57% of children and young people presented with a primary diagnosis of anxiety. Parents reported barriers in accessing care including: service shortages and inaccessibility, underresourced schools, lack of clinician mental health expertise, lack of child-clinician rapport, inconsistent care, financial constraints, lack of mental health awareness among parents, and stigma. Parents want expanded and improved access to services, more respite and support services, supportive schools, and improved mental health education for parents. CONCLUSIONS: Parents of children and young people attending the ED for anxiety and depression are generally dissatisfied with services for child mental health. Solutions that enable parents to better care for their child in the community are needed to improve care.
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ItemUnderstanding parent-reported factors that influence children and young people's anxiety and depression presentations to emergency departments: A multi-site study(WILEY, 2020-10)OBJECTIVE: Victorian ED data show increased presentations for anxiety and depression in children. We aimed to determine parent-reported factors contributing to these presentations. METHODS: Qualitative study with parents of children and young people aged 0-17 years who attended one of four EDs across Victoria between October 2017 and September 2018 and received a primary diagnosis of anxiety or depression (excluding self-harm or suicide attempt). Eligible parents completed semi-structured phone interviews, which were audio-recorded and transcribed. Transcripts were coded and qualitatively analysed using thematic analysis. RESULTS: Seventy parents completed interviews. The average age of children and young people was 14 years (standard deviation 2.4) and 63% (n = 44) identified as female. Thirty (43%) children received a primary diagnosis of depression, compared to 40 (57%) children who received a primary diagnosis of anxiety. The majority of respondents were mothers (n = 59; 84%). Key themes as to why families presented to EDs included: listening to trusted professionals, desperation, a feeling of no alternative, respecting their child's need to feel safe and to rule out a potentially serious medical condition. CONCLUSIONS: Parents bring their children to the ED for many reasons. Policy makers, managers and clinicians should work with parents to develop alternative approaches that provide families with community-based support, particularly for younger children and after hours, in order to provide an appropriate source of care for children and young people with anxiety and depression.
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ItemNo Preview AvailableRepeated presentation of children and adolescents to the emergency department following self-harm: A retrospective audit of hospital data(WILEY, 2020-04)OBJECTIVE: To examine re-presentation rates for self-harm in patients aged 0-18 years to the ED of a tertiary paediatric hospital in Melbourne, Australia, and associated patient, family and hospital presentation factors. METHODS: Data for presentations from 1 July 2016 to 31 December 2018 were extracted from the hospital's electronic medical record system. Self-harm presentations were identified through automated, rule-based coding and manual review of medical notes. Re-presentation rates for intervals up to 12 months were estimated using survival methods with risk factor associations examined using Cox regression. RESULTS: Of the 952 presentations for self-harm after 1 January 2017, 529 were considered first presentations. An estimated 15% (95% confidence interval [CI] 12-19), 20% (95% CI 17-24) and 23% (95% CI 19-27) re-presented for self-harm within 3, 6 and 12 months, respectively. A total of 82% of all presentations were for girls. Patients were more likely to re-present if they had previously presented more than once, were flagged as vulnerable (hazard ratio [HR] 1.35, 95% CI 1.08-1.68), had a history of substance abuse (HR 1.30, 95% CI 1.03-1.64), were female (HR 1.43, 95% CI 0.92-2.21), had self-cut (HR 1.38, 95% CI 0.96-1.97), had an aggressive behaviour response team called during the visit (HR 1.44, 95% CI 0.85-2.45) or had a history of depression (HR 1.27, 95% CI 0.99-1.63). CONCLUSIONS: In this paediatric ED, almost one in four patients re-presented with self-harm within 12 months. Previous presentations and other factors were associated with risk of re-presenting, although no factor was strongly predictive. Future research might examine the generalisability of these findings across settings and explore strategies for prevention.