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.

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.

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.

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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Objective To explore parent perspectives on accessing mental healthcare for children with a chronic physical health condition. Design Qualitative research using semistructured interviews and Framework Analysis. Rankings were used to select attributes for a Discrete Choice Experiment (DCE). Setting Four specialty outpatient clinics (diabetes, epilepsy, bronchiectasis unrelated to cystic fibrosis and epidermolysis bullosa) at an Australian tertiary paediatric hospital. Participants Eighteen parents of children with a chronical physical health condition. Results Most parents identified the child’s general practitioner and/or hospital team as an initial pathway to seek help if they were worried about their child’s mental health. Parents see mental healthcare as part of care for the whole child and want the outpatient clinics to proactively discuss child and family mental health, as well as refer to appropriate services as needed. The hospital being a familiar, child-friendly environment was identified as a key reason the hospital might be a desired place to access mental healthcare, as previous research has found. Six attributes of mental health services were identified as important and will be included in an upcoming DCE: travel time, cost, wait time, available hours, knowledge of physical health condition, and recommendation. Conclusions This study highlights the opportunity presented in specialist outpatient clinics to address the often unmet mental healthcare needs of children with chronic physical health conditions. Parents identified practical ways for outpatient clinics to better facilitate access to mental healthcare. These will be further explored through a quantitative study of parent preferences.