Multinational Qualitative Testing of the Experimental EuroQol Toddler and Infant Populations (EQ-TIPS) Instrument
Author(s)
Janine Verstraete, PhD1, Maria Belizan, MsC2, Elia Bidgood, MPH3, Fatima Al Sayah, PhD4, Samar Farid, PhD5, Ole Marten, PhD6, Nan Luo, PhD7, Kristina Ludwig, DrPH8, Fanni Rencz, PhD9, Michael Herdman, MSc7, Aureliano Paolo Finch, PhD10, Jill Carlton, PhD11, Tessa Peasgood, PhD3.
1Researcher, University of Cape Town, Cape Town, South Africa, 2Institute for Clinical Effectiveness and Health Policy, CABA, Argentina, 3University of Melbourne, Melbourne, Australia, 4University of Alberta, Edmonton, AB, Canada, 5Cairo University, Cairo, Egypt, 6School of Public Health, Bielefeld University, Bielefeld, Germany, 7National University of Singapore, Singapore, Singapore, 8Bielefeld University, Bielefeld, Germany, 9Corvinus University of Budapest, Budapest, Hungary, 10EuroQol Research Foundation, Amsterdam, Netherlands, 11University of Sheffield, Sheffield, United Kingdom.
1Researcher, University of Cape Town, Cape Town, South Africa, 2Institute for Clinical Effectiveness and Health Policy, CABA, Argentina, 3University of Melbourne, Melbourne, Australia, 4University of Alberta, Edmonton, AB, Canada, 5Cairo University, Cairo, Egypt, 6School of Public Health, Bielefeld University, Bielefeld, Germany, 7National University of Singapore, Singapore, Singapore, 8Bielefeld University, Bielefeld, Germany, 9Corvinus University of Budapest, Budapest, Hungary, 10EuroQol Research Foundation, Amsterdam, Netherlands, 11University of Sheffield, Sheffield, United Kingdom.
OBJECTIVES: This study evaluated the content validity of the EuroQol Toddler and Infant Populations (EQ-TIPS), an experimental generic proxy-reported Health-Related Quality of Life (HRQoL) instrument, to inform refinement of its descriptive system.
METHODS: Seventy-nine caregivers of children aged 0-3 years were recruited from eight countries (Argentina, Australia, Canada, Egypt, Germany, Singapore, South Africa, and UK) for two focus groups per country. A standard topic guide facilitated discussions of the EQ-TIPS experimental modified version 2.0, which included eight single-item dimensions: ‘movement’, ‘play’, ‘pain’, ‘communication’, ‘social relationships’, ‘feeding/eating’, ‘sleeping’, and ‘emotions’. Focus groups were recorded, transcribed and analysed using a standardised a priori framework examining comprehensibility, relevance and comprehensiveness.
RESULTS: Most participants were mothers, with diverse representation across children’s age groups and health conditions. Overall, participants considered EQ-TIPS comprehensive and relevant for measuring their child’s HRQoL. ‘Movement’ had the highest level of comprehensibility (85%) when compared to the intended meaning, while other dimensions were interpreted more narrowly. Dimension relevance was highest (>65%) for ‘movement’, ‘emotions’, ‘pain’, ‘sleeping’, and ‘feeding/eating’. Participants suggested improvements for dimension comprehensibility and relevance. For example, ‘emotions’ was interpreted as either expression or regulation, not both; regulation was deemed more appropriate for the target ages. The ‘pain’ dimension required further clarification to focus on presence/severity of pain rather than expression. ‘Feeding/eating’ was often seen as caregiver-led and needed better description, especially for infants. ‘Social relationships’ and ‘communication’ relevance were questioned due to perceived overlap. Suggestions included rewording of ‘play’ to reduce the overlap with ‘social relationships’, and to include cognitive aspects, thereby improving relevance. Eleven additional dimensions were identified, but mentions were infrequent: for example, cognition (n=4), bowel habits (n=3), behaviour (n=3), and growth (n=3).
CONCLUSIONS: The study proposed modifications to enhance the content validity of EQ-TIPS across infants and toddlers with diverse health conditions, supporting refinement of the descriptive system.
METHODS: Seventy-nine caregivers of children aged 0-3 years were recruited from eight countries (Argentina, Australia, Canada, Egypt, Germany, Singapore, South Africa, and UK) for two focus groups per country. A standard topic guide facilitated discussions of the EQ-TIPS experimental modified version 2.0, which included eight single-item dimensions: ‘movement’, ‘play’, ‘pain’, ‘communication’, ‘social relationships’, ‘feeding/eating’, ‘sleeping’, and ‘emotions’. Focus groups were recorded, transcribed and analysed using a standardised a priori framework examining comprehensibility, relevance and comprehensiveness.
RESULTS: Most participants were mothers, with diverse representation across children’s age groups and health conditions. Overall, participants considered EQ-TIPS comprehensive and relevant for measuring their child’s HRQoL. ‘Movement’ had the highest level of comprehensibility (85%) when compared to the intended meaning, while other dimensions were interpreted more narrowly. Dimension relevance was highest (>65%) for ‘movement’, ‘emotions’, ‘pain’, ‘sleeping’, and ‘feeding/eating’. Participants suggested improvements for dimension comprehensibility and relevance. For example, ‘emotions’ was interpreted as either expression or regulation, not both; regulation was deemed more appropriate for the target ages. The ‘pain’ dimension required further clarification to focus on presence/severity of pain rather than expression. ‘Feeding/eating’ was often seen as caregiver-led and needed better description, especially for infants. ‘Social relationships’ and ‘communication’ relevance were questioned due to perceived overlap. Suggestions included rewording of ‘play’ to reduce the overlap with ‘social relationships’, and to include cognitive aspects, thereby improving relevance. Eleven additional dimensions were identified, but mentions were infrequent: for example, cognition (n=4), bowel habits (n=3), behaviour (n=3), and growth (n=3).
CONCLUSIONS: The study proposed modifications to enhance the content validity of EQ-TIPS across infants and toddlers with diverse health conditions, supporting refinement of the descriptive system.
Conference/Value in Health Info
2025-11, ISPOR Europe 2025, Glasgow, Scotland
Value in Health, Volume 28, Issue S2
Code
PCR162
Topic
Methodological & Statistical Research, Patient-Centered Research
Topic Subcategory
Instrument Development, Validation, & Translation, Patient-reported Outcomes & Quality of Life Outcomes
Disease
No Additional Disease & Conditions/Specialized Treatment Areas, Pediatrics