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.

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.

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.

Socioemotional and behavioural difficulties in children with chronic physical conditions: analysis of the Longitudinal Study of Australian Children.

OBJECTIVES: To examine the prevalence of socioemotional and behavioural difficulties (SEBDs) in children with chronic physical conditions (CPCs) and to analyse how this prevalence varied with the type and number of CPCs and the age of the child. DESIGN: Cross-sectional study of a secondary data analysis of the Longitudinal Study of Australian Children. SETTING: An Australian nationally representative sample of general population of children. PARTICIPANTS: 15 610 children-waves aged 6-14 years. INTERVENTION/EXPOSURE: Children reported to have at least 1 of the 21 CPCs by their parents. MAIN OUTCOME MEASURES: Clinically relevant SEBDs were defined using standardised cut-offs of the parent-administered Strengths and Difficulties Questionnaire. RESULTS: Children with a CPC have significantly increased odds of total, internalising and externalising SEBDs than those without (total SEBDs, adjusted odds rartio or OR 3.13, 95% CI 2.52 to 3.89), controlling for sex, age, socioeconomic status and parental mental health status. The highest prevalence of total SEBDs was found in children with chronic fatigue (43.8%), epilepsy (33.8%) and day wetting (31.6%). An increasing number of comorbid CPCs was associated with a rising prevalence of SEBDs. On average, 24.2% of children with at least four CPCs had SEBDs. These children had 8.83-fold increased odds (95% CI 6.9 to 11.31) of total SEBDs compared with children without a CPC. Age was positively related to the odds of SEBDs. CONCLUSION: Children with a CPC have a significantly increased risk of having SEBDs than those without. These findings highlight the need for routine assessment and integrated intervention for SEBDs among children with CPCs.

The relationship between physical and mental health multimorbidity and children's health-related quality of life.

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.

Nonindicated Brain Computed Tomography Scans for Children: Adaptation of an American Measurement Tool and Contrast of Current Practice in an Australian Hospital.

OBJECTIVES: Clinical guidelines state brain computed tomography (CT) for atraumatic headache or first generalized afebrile, atraumatic seizure as nonindicated in neurologically normal children. We aimed to adapt 2 rigorously validated United States-based measures that examine overuse of CT in children with these conditions, and to determine whether these measures can be used in an Australian setting to determine rates of CT scanning in current practice. METHODS: Within an Australian tertiary pediatric hospital, we successfully adapted the measures from the International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM) coding system of the United States measures to the International Classification of Diseases, Tenth Revision, Australian Modification (ICD-10-AM) coding system used in Australia. We conducted a retrospective audit of electronic medical record data from April 1, 2017, to March 31, 2018. Eligible patients were children aged 4 to 17 years who attended one of the hospital outpatient clinics and/or emergency department and/or were admitted to an inpatient ward. The conditions of interest were (1) atraumatic headache and (2) first generalized afebrile, atraumatic seizure. RESULTS: The measure for afebrile seizure was found to have low accuracy and low feasibility in this setting and was not tested further. The adapted measure for atraumatic headache was highly accurate in determining the encounters of interest; however, manual chart review was required to identify nonindicated brain CTs. Using this measure, 601 encounters for atraumatic headache were identified, of which 98 (16.3%) received at least 1 brain CT. We found that 14.1% of these scans were nonindicated, meaning 2% all atraumatic headache encounters received a nonindicated scan; lower than rates reported in international literature. CONCLUSIONS: Using the tool developed in this study, rigorous measurement of the overuse of CT scans in other settings may determine the reasons for the lower rates observed in this study; inform future interventions to minimize overuse; and provide safer, higher quality care to children.

Psychometric Performance of HRQoL Measures: An Australian Paediatric Multi-Instrument Comparison Study Protocol (P-MIC).

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.

The Association Between Autism Symptoms and Child Functioning in a Sample With ADHD Recruited From the Community.

Objective: Although autism spectrum disorder (ASD) symptoms are associated with poorer functioning in children with attention-deficit/hyperactivity disorder (ADHD), it is unclear which ASD symptom domains are most impairing. This study investigated whether specific ASD symptom domains were associated with child functioning in children with ADHD. Method: Parents of 164 children with ADHD completed a diagnostic interview to assess ADHD and comorbidities. Parents reported on ASD symptoms (Social Communication Questionnaire) and child quality of life (Pediatric Quality of Life Inventory 4.0). Parents and teachers completed the Strengths and Difficulties Questionnaire (emotional, conduct, and peer problems). Results: Repetitive and stereotyped behaviors were independently associated with emotional (p = .02) and conduct (p = .03) problems, and poorer quality of life (p = .004). Reciprocal social interaction deficits were independently associated with peer problems (p = .03). Conclusion: Reciprocal social interaction deficits and repetitive and stereotyped behaviors are important areas that should be focused on in ADHD assessment and treatment.

Parent 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.

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.

Repeated presentation of children and adolescents to the emergency department following self-harm: A retrospective audit of hospital data.

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.

Understanding parent-reported factors that influence children and young people's anxiety and depression presentations to emergency departments: A multi-site study.

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.

Strengthening care for children: pilot of an integrated general practitioner-paediatrician model of primary care in Victoria, Australia.

Objective The aim of this study was to assess the acceptability of a novel, integrated general practitioner (GP)-paediatrician model of care, aiming to reduce referrals to hospitals and improve primary care quality. Methods A pre-post study was conducted with five general practice clinics in north-west Melbourne. Over 12 months, 49 GPs and 896 families participated in the intervention that included weekly to fortnightly paediatrician-GP co-consultation sessions at the general practice, monthly case discussions and telephone or email clinical support for GPs. GPs and families completed surveys or interviews at three time points (before the intervention, after running the model for 4 months and at the end of the implementation). Non-identifiable consultation data were extracted from general practice medical records. Results All GPs found the model acceptable. Although not significant, there was a trend towards a lower proportion of referrals to private paediatricians after the intervention (from 34% to 20%) and emergency departments (from 19% to 12%). Outpatient clinic referrals remained steady, and then increased as the paediatrician left the clinics (31% vs 47% before and after the intervention respectively). Unnecessary prescribing of acid suppression medications decreased by 20% (from 29% to 9%). GPs reported improved confidence in paediatric care (88% vs 100% before and after the intervention respectively). Families reported increased confidence in GP care (78% vs 94% before and after the intervention respectively). Model cost estimates were A$172 above usual care per child seen in the co-consultations. Conclusions This novel model of care is acceptable to GPs and families and may improve access and quality of paediatric care. What is known about the topic? A GP-paediatrician integrated model of care appears effective in reducing hospital burden in England, but has not been implemented in Australia. What does this paper add? This pilot, an Australian first, found that a GP-paediatrician integrated model of care is feasible and acceptable in Australia's primary healthcare system, improves GP confidence and quality of paediatric care, may reduce paediatric referrals to outpatient clinics and emergency departments and improves family confidence in, and preference for, GP care. What are the implications for practitioners? This model may reduce hospital burden and improve quality in GP paediatric care while potentially producing cost savings for families and the healthcare system.

'Getting to clinic study': A mixed methods study of families who fail to attend hospital outpatient clinics.

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.

Non-indicated acid-suppression prescribing in a tertiary paediatric hospital: An audit and costing study.

AIM: To quantify (i) indicated versus non-indicated prescribing of acid-suppression therapies (AST) in a tertiary paediatric hospital; (ii) patient, provider and hospital factors associated with non-indicated prescribing; and (iii) medication costs. METHODS: This was a prospective, electronic medical audit conducted at The Royal Children's Hospital (RCH) Melbourne in August-September 2016. Proton pump inhibitor (PPI) and histamine-2 receptor antagonist (H2 RA) prescriptions were extracted, with relevant patient, provider and hospital data. Logistic regression analysis of variables associated with indicated and non-indicated prescribing was undertaken. Costs of indicated and non-indicated prescriptions were estimated, with annual costs projected. RESULTS: There was more non-indicated than indicated prescribing across inpatient, outpatient and emergency department settings. Of the total 303 prescriptions analysed, 238 (78.5%) were non-indicated. Gastrostomy presence (odds ratio (OR) 5.51 (1.96-15.46), P = 0.001), consultant providers (OR 2.69 (1.23-5.87), P = 0.01) and inpatient setting (OR 2.35 (1.16-4.77), P = 0.02) were all associated with a higher likelihood of non-indicated prescribing. The child having a predisposing diagnosis was significantly associated with indicated prescribing (OR 0.41 (0.21-0.80), P = 0.009). A total of 75% of hospital and patient spending was for non-indicated prescriptions. Annual costs of non-indicated AST for Melbourne's RCH were projected to be $15 493. CONCLUSIONS: Non-indicated acid-suppression prescribing is common in a tertiary paediatric hospital and associated with gastrostomy presence, consultant providers and inpatient status. Future research should use qualitative methods to understand clinician and patient drivers of prescribing and use this information to develop and test targeted solutions to reduce non-indicated AST prescribing.