ABSTRACT
Background: Despite important discoveries/advances in treating multiple sclerosis (MS), people with MS (pwMS) can experience delays in accessing new treatments if decision-makers lack robust health economic evidence including health-related quality-of-life (HRQoL) benefits of the intervention. Health state utilities (HSU) are a HRQoL input for cost-utility analysis. Objective(s): Several multi-attribute utility instruments (MAUIs) are available from which HSUs can be derived, but the most appropriate MAUI for use in MS has not been identified. We aimed to determine the preferentially sensitive MAUI(s) that capture the full impact of MS on HRQoL. Method(s): Participants in this study came from a comprehensive HRQoL survey (mid-2020) of the Australian MS Longitudinal Study. The survey included six MAUIs (EQ-5D-5L/ EQ-5D5LPsychosocial, SF-6D versions 1 and 2, AQoL-8D and PropR), and sociodemographic, Covid19-related and subjective wellbeing data. HSUs were generated from Australian value sets. Ceiling and floor effects were investigated. Bland-Altman plots and Shannon's Indices were examined. Minimal important differences and population norms were sourced from the literature. Result(s): N=1,683 pwMS completed the survey (67% response). HSUs were derived for >97% of respondents. Mean age 58.6 years, 80% female, 19% reported severe disease and 63% had relapsing-remitting MS. Mean (SD) HSUs ranged from 0.45+/-0.29 (SF-6Dv1) to 0.63+/-0.22 (AQoL-8D). EQ-5D-5L revealed the highest ceiling (HSU=1.0;n=157,10%) and floor (HSU<=0;n=113,7%) effects. PwMS with EQ-5D-5L HSU<=0/HSU=1 reported mean HSUs of 0.37/0.91, 0.35/0.90, and 0.08/0.85 for the AQoL-8D, EQ-5D5LPsychosocial and SF-6D, respectively. Conclusion(s): While the EQ-5D is the most commonly cited MAUI (in 85% of health technology assessment guidelines), our preliminary comparison results suggest the EQ-5D-5L is not preferentially sensitive in assessing the complex HRQoL domains for pwMS.
ABSTRACT
Objective: During the COVID-19 pandemic, people living with multiple sclerosis (MS) experienced reduced access to in-person care. There is a need to understand the impact of increased use of telehealth services for MS healthcare. Aim(s): This cross-sectional study, in a large Australian sample, investigated use of, and consumer-suggested improvements to, MS care via telehealth. Method(s): Participants of the Australian MS Longitudinal Study completed the survey in October-December 2020. The survey was created with input from persons with MS. We measured use of telehealth for MS care during the pandemic and participants' opinion on needs for future telehealth-related care. We gathered and analysed responses with respect to age, sex, disability level, disease type, education level and geographical rurality. Result(s): The survey was completed by 1,485 participants. Of the 70% who used telehealth healthcare services, 79% rated their experience with existing healthcare providers as good or very good, with 4.4% rating their experience as poor or very poor. Experience with new healthcare providers was still rated well, with 74% rating it as good or very good and 7.5% as poor or very poor. Experiences with telehealth through existing providers was largely rated as similar to in-person consultations (76%), with 5.2% rating it as better and 19% as worse. To improve the experience, 60% suggested guidance on preparing and getting the most out of telehealth. Other suggestions included the use of digital self-monitor tools such as Apps and wearables (26%), access to local clinics with online facilities (22%), and access to better telehealth home facilities such as a better internet connection (20%). Conclusion(s): Seventy percent of people with MS used telehealth during the COVID-pandemic. Whilst most people with MS had a positive experience, improved guidance on using telehealth, additional use of digital self-monitoring tools, and locally accessible telehealth clinics might improve telehealth experiences.