Validation of the EQ-5D-5L and psychosocial bolt-ons in a large cohort of people living with multiple sclerosis in Australia

Abstract

Background Multiple sclerosis (MS) is an inflammatory, neurodegenerative disease of the central nervous system which results in disability over time and reduced quality of life. To increase the sensitivity of the EQ-5D-5L for psychosocial health, four bolt-on items from the AQoL-8D were used to create the nine-item EQ-5D-5L-Psychosocial. We aimed to externally validate the EQ-5D-5L-Psychosocial in a large cohort of people with MS (pwMS) and explore the discriminatory power of the new instrument with EQ-5D-5L/AQoL-8D. Methods A large representative sample from the Australian MS Longitudinal Study completed the AQoL-8D and EQ-5D-5L (including EQ VAS) and both instruments health state utilities (HSUs) were scored using Australian tariffs. Sociodemographic/clinical data were also collected. External validity of EQ-5D-5L-Psychosocial scoring algorithm was assessed with mean absolute errors (MAE) and Spearman’s correlation coefficient. Discriminatory sensitivity was assessed with an examination of ceiling/floor effects, and disability severity classifications. Results Among 1683 participants (mean age: 58.6 years; 80% female), over half (55%) had moderate or severe disability. MAE (0.063) and the distribution of the prediction error were similar to the original development study. Mean (± standard deviation) HSUs were EQ-5D-5L: 0.58 ± 0.32, EQ-5D-5L-Psychosocial 0.62 ± 0.29, and AQoL-8D: 0.63 ± 0.20. N = 157 (10%) scored perfect health (i.e. HSU = 1.0) on the EQ-5D-5L, but reported a mean HSU of 0.90 on the alternative instruments. The Sleep bolt-on dimension was particularly important for pwMS. Conclusions The EQ-5D-5L-Psychosocial is more sensitive than the EQ-5D-5L in pwMS whose HSUs approach those reflecting full health. When respondent burden is taken into account, the EQ-5D-5L-Psychosocial is preferential to the AQoL-8D. We suggest a larger confirmatory study comparing all prevalent multi-attribute utility instruments for pwMS.

Protocol for a pragmatic randomised controlled feasibility study ofMS WorkSmart: an online intervention for Australians with MS who are employed

“…The EQ-5D-5L-Psychosocial has four additional items from the Assessment of Quality of Life scale (sleep, energy, close relationships and social isolation). 45 …”

Reliability and Minimal Detectable Change for Respiratory Muscle Strength Measures in Individuals With Multiple Sclerosis

“…The EuroQol-5D-5L questionnaire (EQ-5D-5L) is a valid method for assessing health-related quality of life 20,21 in people with MS, and consists of 5 measures that, when combined, generate an index ranging from 1 (best health status) to 0 (death). The respondents also rated their overall health on a 0-to100-point visual analog scale (EQ-VAS), with higher values indicating a better health status.…”

Using qualitative free-text data to investigate the lived experience of the COVID-19 pandemic for a large cohort of Australians with different multiple sclerosis related disability levels

“…15 The 2020QoL included six quantitative quality of life survey instruments and bespoke COVID-19 questions quantitatively assessing the impact of COVID-19 on living arrangements, ability to deal with daily life, relationships, emotional well-being, ability to maintain activities of daily living, ability to maintain personal financial circumstances and income. 16 Within the context of the 2020QoL quantitative surveys and a detailed Participant Information Sheet that provided additional context, the 2020QoL Study Questionnaire included a free-text qualitative question regarding COVID-19 to further explore and understand the thoughts and feelings of PwMS across differing disability categories during the COVID-19 pandemic. This question was: "Would you like to provide any other information on your physical and emotional circumstances regarding the COVID-19 pandemic?"…”