Developing the EuroQol toddler and infant populations (EQ-TIPS) instrument: qualitative analysis of expert views on content validity and conceptual challenges

The EuroQol Toddler and Infant Populations (EQ-TIPS) is an experimental generic measure of Health-Related Quality of Life (HRQoL), for which preference weights are planned. Expert consultation aimed to (a) review EQ-TIPS V2.0 wording and content, (b) discuss possible uses for the new measure and challenges with instrument development. Semi-structured online focus group consultations were conducted with three expert groups: (1) EuroQol member experts in preference-weighted questionnaire development and use, (2) paediatric health and development practitioners, and (3) paediatric HRQoL instrument developers. Discussions were audio-recorded, transcribed verbatim and thematically analysed. Experts thought EQ-TIPS would be useful in informing health research and clinical/economic decision-making, due to limited availability of preference-weighted measures for this age group. EQ-TIPS wording was generally considered appropriate, easy to follow and understand. Overall, the six EQ-TIPS dimensions included in version 2.0 were considered to provide an adequate representation of HRQoL in this age group. However, there was substantial agreement that sleep and emotions, not included in the version discussed, could be relevant. All groups further suggested that including dimension examples, rather than referring to ‘age-appropriate behaviour’, could enhance proxy comprehension. Experts emphasised that future iterations of the descriptive system should ensure dimensions remain relevant to children’s HRQoL, rather than measuring the impact on the proxy respondent. Overall, content in EQ-TIPS version 2.0 was considered appropriate for the target age group, but some rewording was suggested, as well as testing of additional content to ensure adequate coverage of the construct measured. Future work should include caregivers from diverse geographical, socio-economic and cultural settings. Currently, there are few questionnaires designed to measure Health-Related Quality of Life (HRQoL) in toddlers and infants. These questionnaires help inform clinical care, research and policy decisions about children’s health. This study discusses a new questionnaire, the EuroQol Toddler and Infant Populations (EQ-TIPS), with three groups of experts. The discussions focused on examining EQ-TIPS wording, content, suitability, potential additional dimensions, and assessment challenges. EQ-TIPS was well-received by experts and considered an important HRQoL questionnaire. Most experts supported the use of the term ‘age-appropriate’ in the survey but suggested adding age-specific examples to improve interpretation. Experts suggested that sleep and emotions are important aspects of HRQoL in this age group and should be considered for further testing. Any changes to the wording of the measure need to ensure that it captures what is important for the child and not the impact on the caregiver. Future development and testing of EQ-TIPS should include caregivers with lower levels of education and from different socio-economic backgrounds.