None listed
Conditions
Brief summary
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’ (HRQoL)) to understand how these tests, treatments and services improve children’s lives. However, sometimes this can be hard as there is a lack of HRQoL questionnaires available for children aged 2-4 years old as well as a lack of evidence for how these questionnaires perform in children of this age group. This study has adapted a commonly used questionnaire for slightly older children (EQ-5D-Y) for children aged 2-4 years. We will compare how this new adapted questionnaire performs compared to the other currently available HRQoL questionnaires for children in this age group. This will involve collecting an initial and follow-up survey from participants. The follow-up survey will be a simplified version of the initial survey that will be sent 2-8 weeks after completion of the first survey. The performance of the new adapted questionnaire will be analysed and compared to the performance of other HRQoL questionnaires for children aged 2-4 years. We will also look at how the performance compares by child age and disease group. We plan collect data on 400 Australian children aged 2-4 years (from children who are well through to those that are very sick). The primary objective of the study is to understand how well the new adapted questionnaire (adapted version of the EQ-5D-Y) performs compared to other currently available child HRQoL questionnaires for children aged 2-4 years (i.e. consistency, acceptability, feasibility, reliability, responsiveness and validity). Another objective of the study is to provide a validated EQ-5D-Y version for young children that is ‘fit for purpose’ in judging the effectiveness and cost effectiveness of child interventions.
Interventions
This study is to test the administration of the EQ-5D-Y proxy survey adapted for children aged 2-4 years involving the prospective data collection of several paediatric health related quality of life (HRQoL) instruments (including the EQ-5D-Y proxy survey adapted for children aged 2-4 years) via two surveys completed by the caregiver (proxy), an initial 15-30-minute survey and a retest follow-up 5 minute survey 4 weeks later.
The initial survey will include the following questionnaires: Inform
This study is to test the administration of the EQ-5D-Y proxy survey adapted for children aged 2-4 years involving the prospective data collection of several paediatric health related quality of life (HRQoL) instruments (including the EQ-5D-Y proxy survey adapted for children aged 2-4 years) via two surveys completed by the caregiver (proxy), an initial 15-30-minute survey and a retest follow-up 5 minute survey 4 weeks later. The initial survey will include the following questionnaires: Informed Consent, Demographic Information, Carer Quality of Life (EQ-HWB), Strengths and Difficulties Questionnaire (SDQ), Pediatric Quality of Life Inventory (PedsQL), Toddler and Infant Health Related Quality of Life (TANDI), EQ-5D-Y adapted (3L and 5L), EQ-5D-Y VAS, Child Health Utility (CHU9D), Global Health Measure, Health Utilities Index (HUI2/3) and relevant disease-specific questionnaires: Asthma PedsQL, KIDSCREEN-27: Health Questionnaire for Children and Young People, Sleep disturbances Scale For Children (SDSC), Child Perceptions Questionnaire (CPQ), Revised Child Anxiety and Depression Scale 25 (RCADS-25), ADHD-Symptoms and Normal-Behaviors (SWAN). Participants will also be asked to report the difficulty of each instrument. The follow-up survey will include: PedsQL, TANDI, EQ-5D-Y adapted (3L and 5L), EQ-5D-Y VAS, CHU9D and Global Health Measure. Participants will also be asked to report the difficulty of each instrument. The performance of the adapted survey will be compared to that of the Global Health Measure, TANDI, CHU9D, HUI2/3 and PedsQL. Instruments will be assessed in terms of acceptability, feasibility, reliability, validity and sensitivity within the Australian context. Caregivers of children will primarily be recruited by research assistants who will approach families face-to-face in waiting areas across the hospital and ask caregivers to complete the initial survey on an iPad or their own device (will be provided a QR code or text a link on the spot). Some participants will also be recruited via social media adverts, adverts on the virtual telehealth waiting room, or via online survey panels, these participants will complete the survey online via REDcap. The follow-up survey will be delivered online. Participants may be enrolled into both the Quality of Kids' Lives Study and this study. The same specific disease subgroups will be assessed for this study.
Sponsors
EuroQol group
Eligibility
Sex/Gender
All
Age
16 Years to No maximum
Healthy volunteers
Yes
Inclusion criteria
Parent/caregiver of a child(ren) aged of 2-4 years old (inclusive) at enrolment.
Exclusion criteria
• Is unable to communicate in written English. Language will be simplified as much as possible to allow inclusion of caregivers who might have limited English proficiency • Reside outside of Australia • Unable to answer or comprehend questions
Outcome results
None listed