TY - JOUR
T1 - Accounts from developers of generic health state utility instruments explain why they produce different QALYs
T2 - A qualitative study
AU - Pickles, Kristen
AU - Lancsar, Emily
AU - Seymour, Janelle
AU - Parkin, David
AU - Donaldson, Cam
AU - Carter, Stacy M.
N1 - Publisher Copyright:
© 2019 The Authors
PY - 2019/11
Y1 - 2019/11
N2 - Purpose and setting: Despite the label “generic” health state utility instruments (HSUIs), empirical evidence shows that different HSUIs generate different estimates of Health-Related Quality of Life (HRQoL) in the same person. Once a HSUI is used to generate a QALY, the difference between HSUIs is often ignored, and decision-makers act as if ‘a QALY is a QALY is a QALY’. Complementing evidence that different generic HSUIs produce different empirical values, this study addresses an important gap by exploring how HSUIs differ, and processes that produced this difference. 15 developers of six generic HSUIs used for estimating the QOL component of QALYs: Quality of Well-Being (QWB) scale; 15 Dimension instrument (15D); Health Utilities Index (HUI); EuroQol EQ-5D; Short Form-6 Dimension (SF-6D), and the Assessment of Quality of Life (AQoL) were interviewed in 2012–2013. Principal findings: We identified key factors involved in shaping each instrument, and the rationale for similarities and differences across measures. While HSUIs have a common purpose, they are distinctly discrete constructs. Developers recalled complex developmental processes, grounded in unique histories, and these backgrounds help to explain different pathways taken at key decision points during the HSUI development. The basis for the HSUIs was commonly not equivalent conceptually: differently valued concepts and goals drove instrument design and development, according to each HSUI's defined purpose. Developers drew from different sources of knowledge to develop their measure depending on their conceptualisation of HRQoL. Major conclusions/contribution to knowledge: We generated and analysed first-hand accounts of the development of the HSUIs to provide insight, beyond face value, about how and why such instruments differ. Findings enhance our understanding of why the six instruments developed the way they did, from the perspective of key developers of those instruments. Importantly, we provide additional, original explanation for why a QALY is not a QALY is not a QALY.
AB - Purpose and setting: Despite the label “generic” health state utility instruments (HSUIs), empirical evidence shows that different HSUIs generate different estimates of Health-Related Quality of Life (HRQoL) in the same person. Once a HSUI is used to generate a QALY, the difference between HSUIs is often ignored, and decision-makers act as if ‘a QALY is a QALY is a QALY’. Complementing evidence that different generic HSUIs produce different empirical values, this study addresses an important gap by exploring how HSUIs differ, and processes that produced this difference. 15 developers of six generic HSUIs used for estimating the QOL component of QALYs: Quality of Well-Being (QWB) scale; 15 Dimension instrument (15D); Health Utilities Index (HUI); EuroQol EQ-5D; Short Form-6 Dimension (SF-6D), and the Assessment of Quality of Life (AQoL) were interviewed in 2012–2013. Principal findings: We identified key factors involved in shaping each instrument, and the rationale for similarities and differences across measures. While HSUIs have a common purpose, they are distinctly discrete constructs. Developers recalled complex developmental processes, grounded in unique histories, and these backgrounds help to explain different pathways taken at key decision points during the HSUI development. The basis for the HSUIs was commonly not equivalent conceptually: differently valued concepts and goals drove instrument design and development, according to each HSUI's defined purpose. Developers drew from different sources of knowledge to develop their measure depending on their conceptualisation of HRQoL. Major conclusions/contribution to knowledge: We generated and analysed first-hand accounts of the development of the HSUIs to provide insight, beyond face value, about how and why such instruments differ. Findings enhance our understanding of why the six instruments developed the way they did, from the perspective of key developers of those instruments. Importantly, we provide additional, original explanation for why a QALY is not a QALY is not a QALY.
KW - Australia
KW - EQ-5D
KW - Europe
KW - Health Utilities Index (HUI)
KW - Health state utility instruments
KW - North America
KW - Preference weighted quality of life instruments
KW - Short Form 6D (SF-6D)
UR - http://www.scopus.com/inward/record.url?scp=85072574623&partnerID=8YFLogxK
U2 - 10.1016/j.socscimed.2019.112560
DO - 10.1016/j.socscimed.2019.112560
M3 - Article
SN - 0277-9536
VL - 240
JO - Social Science and Medicine
JF - Social Science and Medicine
M1 - 112560
ER -