Stakeholder Engagement and Expert Consultation on the EuroQol Toddler and Infant Populations (EQ-TIPS) Measure of Health-Related Quality of Life (HRQoL)

Speaker(s)

Verstraete J1, Kreimeier S2, Dalziel K3, Morrow BM1, Jelsma J4, Roudijk B5, Devlin N6, Bidgood E7, Herdman M8
1Department of Paediatrics and Child Health, University of Cape Town, Cape Town, WC, South Africa, 2Bielefeld University, Bielefeld, North Rhine–Westphalia, Germany, 3The University of Melbourne, Melbourne, VIC, Australia, 4University of Cape Town, Cape Town, Western Cape, South Africa, 5EuroQol Research Foundation, Rotterdam, ZH, Netherlands, 6University of Melbourne, Melbourne, VIC, Australia, 7Murdoch Children's Research Institute, Melbourne, VIC, Australia, 8National University of Singapore, Singapore, Singapore

Presentation Documents

OBJECTIVES: EQ-TIPS is an experimental HRQoL instrument for children 0–3 years. Recent assessment of suitability for international use included stakeholder engagement and expert consultation aimed at a) critically reviewing EQ-TIPS wording and content; b) assessing the need to reduce, combine, or add dimensions; c) exploring potential challenges with using EQ-TIPS.

METHODS: Participants were drawn from the following groups: likely EQ-TIPS users; experts in PROMs use and/or development; experts in child health and development. One-hundred and thirty-nine stakeholders were recruited for three web-based surveys through snowballing and 39 experts were purposively sampled to ensure a range of expertise and geographical location. Data was analyzed by thematic analysis.

RESULTS: The EQ-TIPS was well received by stakeholders who noted its potential value in clinical practice, health research, and to inform health decision-making. In terms of content, EQ-TIPS was considered to include relevant dimensions which were appropriate for the intended age-range and were clear, concise and easy to use. Additional dimensions of sleep and emotional functioning were suggested for future testing. EQ-TIPS was well-understood by caregivers/parents who gave appropriate examples for each dimension across the age-range. There was little consensus as to whether items should refer to ‘age-appropriate’ behavior. Including examples for each dimension and instructions for instrument completion were proposed to reduce subjectivity. Experts were uncertain whether the health of very young children (<6months) can be described in the same way as older children, as attributes may be interpreted differently. It was noted that several factors may influence proxy reporting, including amount of time dedicated to caregiving, relationship to the child, family structure, and health spill-over.

CONCLUSIONS: Stakeholders valued the opportunity to contribute to EQ-TIPS development and provided valuable input for further international development of the instrument. Future research will focus on testing suggested changes in qualitative and quantitative work in a range of countries.

Code

PCR245

Topic

Patient-Centered Research

Topic Subcategory

Instrument Development, Validation, & Translation

Disease

No Additional Disease & Conditions/Specialized Treatment Areas, Pediatrics