Quality of Kids' Lives Study – Finding the best way to measure kids’ health

This is a multi-instrument comparison study involving the prospective collection of several paediatric health related quality of life (HRQoL) instruments via two surveys, an initial 15-30-minute survey and a retest follow-up 5 minute survey 4 weeks later (or two days later if allocated to shorter follow-up group). 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 (3L and 5L), EQ-5D-Y VAS, Child Health Utility (CHU9D), Adolescent Quality of Life (AQoL), Health Utilities Index (HUI2/3), EQ-5D-5L and PROMIS-25 (Pediatric Profile) and relevant disease-specific questionnaires: Asthma PedsQL, KIDSCREEN-27, 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 a self-reported difficulty question for each instrument. The follow-up survey will include the following questionnaires: PedsQL, TANDI, EQ-5D-Y (3L and 5L), EQ-5D-Y VAS, and CHU9D, as well as self-reported difficulty for each instrument. Caregivers (proxy) will always complete the demographic section and carer quality of life instrument. If the study child is under the age of 7 years the caregiver (proxy) will complete all questions and instruments of both surveys. If the study child is aged 7 years or above and the caregiver determines the child is able to answer questions about their own health and wellbeing, the child will be asked to provide consent and to answer (self-report) the pediatric quality of life instruments of both surveys. This study will compare the performance of the aforementioned HRQoL instruments in terms of acceptability, feasibility, reliability, validity and sensitivity within the Australian context as well compare child age and disease group. We plan to collect data on N=6,500 Australian children. There will be three key samples within the study cohort: (1) n=1,000 children from The Royal Children's Hospital, (2) n=4,000 children with specific disease conditions recruited via online survey panels (n=200-400 from each disease group: ADHD, anxiety or depression, ASD, asthma, dental decay and sleep problems, recurrent abdominal pain, epilepsy, eating disorders, type 1 diabetes, and wetting problems) and (3) n=1,500 population sample recruited via online survey panels. A small subset of participants will be selected at random to complete observation sessions at a shorter follow-up timepoint at 2 days post initial survey (n=200). Caregivers of children from The Royal Children's Hospital sample (n=1,000) will predominantly 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 be recruited via social media adverts or adverts on the virtual telehealth waiting room, these participants will complete the survey online via REDcap (with a link to the survey provided in the adverts). The follow-up survey will be delivered online. Caregivers from the online panel samples (n=4,000 children with specific disease conditions and n=1,500 population sample) will be recruited via an external online survey panel company. Participants from these samples will complete both the initial and follow-up survey online. Participants where the study child is aged 2-4 years may be enrolled into both the Quality of Little Lives Study and this study. The same specific disease subgroups will be assessed for this study.