Edward J D Webb1, David Meads2, Ieva Eskytė3, Helen L Ford4, Hilary L Bekker2, Jeremy Chataway5,6, George Pepper7, Joachim Marti8, Yasmina Okan9, Sue H Pavitt10, Klaus Schmierer11,12, Ana Manzano13. 1. Leeds Institute of Health Sciences, University of Leeds, Leeds, UK. e.j.d.webb@leeds.ac.uk. 2. Leeds Institute of Health Sciences, University of Leeds, Leeds, UK. 3. School of Law, University of Leeds, Leeds, UK. 4. Leeds Teaching Hospitals NHS Trust, Leeds, UK. 5. Queen Square Multiple Sclerosis Centre, Department of Neuroinflammation, UCL Queen Square Institute of Neurology, Faculty of Brain Sciences, University College London, London, WC1B 5EH, UK. 6. National Institute for Health Research, University College London Hospitals, Biomedical Research Centre, London, UK. 7. Shift.Ms, London, UK. 8. Centre for Primary Care and Public Health (Unisanté), University of Lausanne, Lausanne, Switzerland. 9. Centre for Decision Research, Leeds University Business School, University of Leeds, Leeds, UK. 10. Dental Translational and Clinical Research Unit, School of Dentistry, University of Leeds, Leeds, UK. 11. The Blizard Institute (Neuroscience, Surgery & Trauma), Queen Mary University of London, Barts and The London School of Medicine & Dentistry, London, UK. 12. Clinical Board Medicine (Neuroscience), The Royal London Hospital, Barts Health NHS Trust, London, UK. 13. School of Sociology and Social Policy, University of Leeds, Leeds, UK.
Abstract
BACKGROUND: Relapsing-remitting multiple sclerosis (RRMS) is an incurable disease characterised by relapses (periods of function loss) followed by full or partial recovery, and potential permanent disability over time. Many disease-modifying treatments (DMTs) exist that help reduce relapses and slow disease progression. Most are contraindicated during conception/pregnancy and some require a discontinuation period before trying to conceive. Although around three-quarters of people with RRMS are women, there is limited knowledge about how reproductive issues impact DMT preference. OBJECTIVE: The aim of this study was to measure the preferences for DMTs of women with RRMS who are considering pregnancy. DESIGN: An online discrete choice experiment (DCE). METHODS: Participants chose between two hypothetical DMTs characterised by a set of attributes, then indicated if they preferred their choice to no treatment. Attributes were identified from interviews and focus groups with people with RRMS and MS professionals, as well as literature reviews, and included the probability of problems with pregnancy, discontinuation of DMTs, and breastfeeding safety. In each DCE task, participants were asked to imagine making decisions in three scenarios: now; when trying to conceive; and when pregnant. ANALYSIS: Two mixed logit models were estimated, one to assess the statistical significance between scenarios and one in maximum acceptable risk space to allow comparison of the magnitudes of parameters between scenarios. SAMPLE: Women with RRMS who were considering having a child in the future, recruited from a UK MS patient register. RESULTS: Sixty respondents completed the survey. Participants preferred no treatment in 12.6% of choices in the 'now' scenario, rising significantly to 37.6% in the 'trying to conceive' scenario and 60.3% in the 'pregnant' scenario (Kruskal-Wallis p < 0.001). This pattern corresponds with results from models that included a no-treatment alternative-specific constant (ASC) capturing differences between taking and not taking a DMT not specified by the attributes. The ASC was lower in the trying to conceive scenario than in the now scenario, and lower still in the pregnant scenario, indicating an intrinsic preference for no treatment. Participants also placed relatively less preference on reducing relapses and avoiding disease progression in the trying to conceive and pregnant scenarios compared with a lower risk of problems with pregnancy. In the trying to conceive scenario, participants' preference for treatments with shorter washout periods increased. CONCLUSION: Women with RRMS considering having a child prefer DMTs with more favourable reproduction-related attributes, even when not trying to conceive. Reproductive issues also influenced preferences for DMT attributes not directly related to pregnancy, with preferences dependent on the life circumstances in which choices were made. The design of the DCE highlights the benefits of considering the scenario in which participants make choices, as they may change over time.
BACKGROUND: Relapsing-remitting multiple sclerosis (RRMS) is an incurable disease characterised by relapses (periods of function loss) followed by full or partial recovery, and potential permanent disability over time. Many disease-modifying treatments (DMTs) exist that help reduce relapses and slow disease progression. Most are contraindicated during conception/pregnancy and some require a discontinuation period before trying to conceive. Although around three-quarters of people with RRMS are women, there is limited knowledge about how reproductive issues impact DMT preference. OBJECTIVE: The aim of this study was to measure the preferences for DMTs of women with RRMS who are considering pregnancy. DESIGN: An online discrete choice experiment (DCE). METHODS:Participants chose between two hypothetical DMTs characterised by a set of attributes, then indicated if they preferred their choice to no treatment. Attributes were identified from interviews and focus groups with people with RRMS and MS professionals, as well as literature reviews, and included the probability of problems with pregnancy, discontinuation of DMTs, and breastfeeding safety. In each DCE task, participants were asked to imagine making decisions in three scenarios: now; when trying to conceive; and when pregnant. ANALYSIS: Two mixed logit models were estimated, one to assess the statistical significance between scenarios and one in maximum acceptable risk space to allow comparison of the magnitudes of parameters between scenarios. SAMPLE: Women with RRMS who were considering having a child in the future, recruited from a UK MS patient register. RESULTS: Sixty respondents completed the survey. Participants preferred no treatment in 12.6% of choices in the 'now' scenario, rising significantly to 37.6% in the 'trying to conceive' scenario and 60.3% in the 'pregnant' scenario (Kruskal-Wallis p < 0.001). This pattern corresponds with results from models that included a no-treatment alternative-specific constant (ASC) capturing differences between taking and not taking a DMTnot specified by the attributes. The ASC was lower in the trying to conceive scenario than in the now scenario, and lower still in the pregnant scenario, indicating an intrinsic preference for no treatment. Participants also placed relatively less preference on reducing relapses and avoiding disease progression in the trying to conceive and pregnant scenarios compared with a lower risk of problems with pregnancy. In the trying to conceive scenario, participants' preference for treatments with shorter washout periods increased. CONCLUSION:Women with RRMS considering having a child prefer DMTs with more favourable reproduction-related attributes, even when not trying to conceive. Reproductive issues also influenced preferences for DMT attributes not directly related to pregnancy, with preferences dependent on the life circumstances in which choices were made. The design of the DCE highlights the benefits of considering the scenario in which participants make choices, as they may change over time.
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