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PROJECT 1
Generating a comprehensive database of patient-level data to understand the performance of alternative paediatric Health-Related Quality of Life (HRQoL) measures.
Quality of Kids Lives Study – Finding the best way to measure kids’ health
Each year, researchers and doctors work to find better tests, treatments, and services for children. They often use questionnaires that ask about a child’s general health (also called ‘health related quality of life’) to understand how these tests, treatments and services improve children’s lives. However, sometimes this can be hard as there is a lack of sound evidence on how well these health related quality of life (HRQoL) questionnaires perform in children. More evidence on the performance of these questionnaires is required in Australia to guide decision making. We hope the results of this work may help us to better measure overall health in children in order to provide better health care to children in the future.
This project compares lots of different HRQoL questionnaires in children (sometimes called a ‘multi-instrument comparison study’). This study tests the following questionnaires: Global Health Measure, Child Health Utility (CHU9D), Pediatric Quality of Life Inventory (PedsQL), EQ-5D-Y (3L and 5L), EQ-5D-5L, Toddler and Infant (TANDI), EQ Health and Wellbeing (EQ-HWB-S), Assessment of Quality of Life 6D (AQoL-6D), Patient-Reported Outcome Measurement Information System 25 (PROMIS-25), Health Utilities Index 2 and 3 (HUI2/3) and disease specific questionnaires. The study involves an initial and follow-up survey. The follow-up survey is a simplified version of the initial survey that is sent out four weeks after completion of the first survey. A small portion of participants are sent the follow-up survey two days after completion of the first survey to allow for assessment of reliability. The performance of these various child HRQoL questionnaires will be analysed and compared. We will also look at a subset of disease groups to see how generic HRQoL questionnaires perform compared with disease-specific questionnaires. We collected data on over 7,200 Australian children (from children who are well through to those that are very sick).
The objectives of the study are to:
• Understand how well various child HRQoL questionnaires can be filled out by parents and how well they measure problems and improvements in health (i.e. acceptability, feasibility, reliability, responsiveness, validity and sensitivity).
• Provide government, health practitioners and researchers with a practical set of tools that are ‘fit for purpose’ in judging the effectiveness and cost effectiveness of child health interventions.
The project is being led by a team of researchers based in the University of Melbourne and Murdoch Children’s
Research Institute (MCRI), in collaboration with doctors at The Royal Children’s Hospital (RCH) and, researchers at University of Technology Sydney (UTS).
PROJECT 1 PUBLICATIONS AND RESOURCES
Resources:
Australian Paediatric Multi-Instrument Comparison (P-MIC) Study: Technical Methods Paper
Published Papers:
Conference Presentations:
2021
Renee Jones, Brendan Mulhern, Nancy Devlin, Harriet Hiscock, Kim Dalziel on behalf of QUOKKA (Quality of Life in Kids: Key Evidence for Decision Makers in Australia), An Australian paediatric multi-instrument comparison (P-MIC) study protocol for measurement of paediatric health-related quality of life, 20-minute presentation at the 2021 Australian Health Economics Society (AHES) Conference.
2022
Renee Jones, Brendan Mulhern, Nancy Devlin, Harriet Hiscock, Rachel O’Loughlin, Xiuqin Xiong, Mina Bahrampour, and Kim Dalziel; Comparing the psychometric performance of generic paediatric health-related quality of life measures: Evidence from the Australian paediatric multi-instrument comparison (P-MIC) study; ISOQOL 2022; Oral presentation.
Mina Bahrampour, Renee Jones, Kim Dalziel, Nancy Devlin, and Brendan Mulhern; What Does the EQ-5D-Y-5L Measure in Comparison to other Generic Paediatric Health Related Quality of Life Instruments?; Australian Health Economics Society (AHES) 2022; Oral presentation.
Kim Dalziel, Nancy Devlin, Xiuqin Xiong, Brendan Mulhern, Mina Bahrampour, Kristy McGregor, Renee Jones, Rachel O’Loughlin, Shilana Yip, Harriet Hiscock; The Australian paediatric multi-instrument comparison (P-MIC) study: data quality, feasibility, acceptability, and construct validity of the EQ-5D-Y-3L, EQ-5D-Y-5L, CHU9D, PedsQL, HUI, PROMIS-25 and AQoL-6D.; ISPOR Europe 2022; Poster.
Mina Bahrampour, Renee Jones, Nancy Devlin, Kim Dalziel, and Brendan Mulhern; What Does the EQ-5D-Y-5L Measure in Comparison to other Generic Paediatric Health Related Quality of Life Instruments?; ISPOR Europe 2022; Poster.
Mina Bahrampour, Nancy Devlin, and Brendan Mulhern; An Empirical Comparison of EQ-5D-Y-5L and EQ-5D-Y-3L Questionnaires (data cut 1); ISPOR Europe 2022; Poster.
Renee Jones, Brendan Mulhern, Nancy Devlin, Harriet Hiscock, and Kim Dalziel; Finding out the best way to measure paediatric health-related quality of life to ensure we are providing the best possible pharmaceuticals, technologies, and health services to our children in the future: An Australian paediatric multi-instrument comparison (P-MIC) study protocol and initial results.; HSRAANZ 2022; Poster.
Renee Jones, Brendan Mulhern, Nancy Devlin, Rachel O’Loughlin, Xiuqin Xiong, Mina Bahrampour, Kristy McGregor, Shilana Yip, Harriet Hiscock, Kim Dalziel; The Australian paediatric multi-instrument comparison (P-MIC) study: data quality, feasibility, acceptability, and descriptive comparisons of the EQ-5D-Y-3L, EQ-5D-Y-5L, TANDI and PedsQL; EuroQol Plenary 2022; Paper.
Mina Bahrampour, Renee Jones, Kim Dalziel, Nancy Devlin, and Brendan Mulhern; What Does the EQ-5D-Y-5L Measure in Comparison to other Generic Pediatric Health Related Quality of Life Instruments? A Dimensionality Assessment Using Factor Analysis.; EuroQol Plenary 2022; Paper.
2023
Alexander van Heusden, Oliver Rivero-Arias, Michael Herdman, Nancy Devlin, Kim Dalziel; Psychometric analysis comparison of the adapted version of the EQ-5D-Y-3L/5L for use in children aged 2-4 years.; EuroQol academy 2023; Poster.
Mina Bahrampour, Nancy Devlin, Renee Jones, Kim Dalziel, and Brendan Mulhern; An Empirical Comparison of EQ-5D-Y-5L and EQ-5D-Y-3L Descriptive Systems in Australia (data cut 2); EuroQol academy 2023; Poster.
Mina Bahrampour, Tianxin Pan, Nancy Devlin, Brendan Mulhern, Aureliano Finch, Juan Manuel Ramos-Goni, and Yan Feng; Mapping from EQ-5D-Y-5L To EQ-5D-Y-3L: Initial Exploration of Methodological Issues; EuroQol Plenary Meeting 2023; Poster.
Renee Jones, Nancy Devlin, Harriet Hiscock, Brendan Mulhern, Rachel O’Loughlin, and Kim Dalziel; Ceiling Effects and Known Group Validity of PedsQL, EQ-5D-Y-3L, EQ-5D-Y-5L, and CHU9D Among Children with Asthma, Sleep Problems and Epilepsy: Results from the Australian Paediatric Multi-Instrument Comparison (P-MIC) Study.; IHEA 2023; Oral presentation as part of organised session.
Kim Dalziel, Nancy Devlin, Oliver Rivero-Arias, Mike Herdman, Harriet Hiscock, Li Huang, Alexander van Heusden, and Renee Jones; Development, Testing and Valuation of an Adapted Version of the EQ-5D-Y-3L for Measuring Health-Related Quality of Life of Children Aged 2-4 Years.; IHEA 2023; Oral presentation as part of organised session.
Alexander van Heusden, Oliver Rivero-Arias, Mike Herdman, Harriet Hiscock, Nancy Devlin , Kim Dalziel; Psychometric Comparison of the Adapted EQ-5D-Y-3L/5L against PedsQl for the Use in Children Aged 2-4 Years Old.; ISOQOL 2023; Oral presentation.
Renee Jones, Brendan Mulhern, Rachel O’Loughlin, Nancy Devlin, Harriet Hiscock, and Kim Dalziel; How does the psychometric performance of common generic paediatric health-related quality of life instruments compare in children with different health conditions? Results from the Australian Paediatric Multi-Instrument Comparison (P-MIC) Study.; Australian Health Economics Society (AHES) 2023; Oral presentation.
Rachel O’Loughlin, Renee Jones, Gang Chen, Brendan Mulhern, Harriet Hiscock, Nancy Devlin, and Kim Dalziel.; Comparing the psychometric performance of generic paediatric health-related quality of life instruments in children and adolescents with Attention-Deficit/Hyperactivity Disorder, Anxiety and/or Depression; Australian Health Economics Society (AHES) 2023; Oral presentation.
Cate Bailey, Kim Dalziel, Renee Jones, Harriet Hiscock, Nancy Devlin, Tessa Peasgood; Psychometric performance of the EQ-HWB-S (EQ Health and Wellbeing Instrument) for measuring quality of life in parents of children with health conditions; Australian Health Economics Society (AHES) 2023; Oral presentation.