Development of the Adelphi Caregiver Experience Questionnaire© (ACARE): A Novel Tool Designed to Measure and Understand the Burden and Quality of Life Impacts of the Caregiver Role
Author(s)
Gavin Dickie, MSc1, Kaelyn Rupinski, BS1, James Piercy, PhD2, Jonathan James de Courcy, BSc2, Victoria Higgins, BA (Hons)2, Lily Settel, MPH1, Nina Sankriti Kumar, BA1, Maggie McConnell, MMS1, Alan Shields, PhD1, Leighann Litcher-Kelly, PhD1.
1Adelphi Values, Boston, MA, USA, 2Adelphi Real World, Bollington, United Kingdom.
1Adelphi Values, Boston, MA, USA, 2Adelphi Real World, Bollington, United Kingdom.
OBJECTIVES: The burden and impacts of caring for individuals with health conditions are often not well understood or quantified, with the availability of existing defensible caregiver burden assessments lacking in clinical research. This deficit poses challenges for understanding how treatments may reduce burden and enhance sustainability in the caregiver role. The goal of this study was to develop a novel questionnaire (Adelphi Caregiver Experience Questionnaire; ACARE), to better quantify the burden and associated impacts across different caregiver settings.
METHODS: A draft questionnaire was developed based on a previously conducted concept-focused literature review and review of existing caregiver assessments. The questionnaire included instructions and 12 items assessed on a five-point verbal response scale. Concept inclusion was based on appropriateness across caregiver settings, measurability across multiple contexts, and frequency/importance from the literature. Qualitative meetings with ten caregiving experts (including patient organization members, non-professional caregivers, and professional caregivers) were conducted to elicit feedback on the relevance and appropriateness of the questionnaire, and to inform potential questionnaire revisions.
RESULTS: All experts reported the ACARE questionnaire was clear and understandable, and reported the item concepts as relevant and important to caregivers. Experts stated the concepts were measured appropriately (≥80.0%), with the majority (≥60.0%) reporting the questionnaire to be comprehensive, with no concepts reported to be missing by more than one expert. Most experts reported the 7-day recall period (70.0%) and response scale (90.0%) as appropriate. The term “burden” was removed from the questionnaire based on expert feedback, and minor text changes were made to improve the clarity of item concepts.
CONCLUSIONS: Meetings with caregiving experts demonstrated the value of measuring caregiver burden and helped refine the ACARE questionnaire for future use. Future research will include gathering evidence of content validity (e.g., cognitive debriefing interviews), psychometric validation, and administration of the questionnaire in observational studies to obtain real-world data.
METHODS: A draft questionnaire was developed based on a previously conducted concept-focused literature review and review of existing caregiver assessments. The questionnaire included instructions and 12 items assessed on a five-point verbal response scale. Concept inclusion was based on appropriateness across caregiver settings, measurability across multiple contexts, and frequency/importance from the literature. Qualitative meetings with ten caregiving experts (including patient organization members, non-professional caregivers, and professional caregivers) were conducted to elicit feedback on the relevance and appropriateness of the questionnaire, and to inform potential questionnaire revisions.
RESULTS: All experts reported the ACARE questionnaire was clear and understandable, and reported the item concepts as relevant and important to caregivers. Experts stated the concepts were measured appropriately (≥80.0%), with the majority (≥60.0%) reporting the questionnaire to be comprehensive, with no concepts reported to be missing by more than one expert. Most experts reported the 7-day recall period (70.0%) and response scale (90.0%) as appropriate. The term “burden” was removed from the questionnaire based on expert feedback, and minor text changes were made to improve the clarity of item concepts.
CONCLUSIONS: Meetings with caregiving experts demonstrated the value of measuring caregiver burden and helped refine the ACARE questionnaire for future use. Future research will include gathering evidence of content validity (e.g., cognitive debriefing interviews), psychometric validation, and administration of the questionnaire in observational studies to obtain real-world data.
Conference/Value in Health Info
2025-11, ISPOR Europe 2025, Glasgow, Scotland
Value in Health, Volume 28, Issue S2
Code
PCR62
Topic
Patient-Centered Research
Topic Subcategory
Instrument Development, Validation, & Translation, Patient-reported Outcomes & Quality of Life Outcomes
Disease
No Additional Disease & Conditions/Specialized Treatment Areas