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The Impact of Reproductive Issues on Preferences of Women with Relapsing Multiple Sclerosis for Disease-Modifying Treatments

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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.

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Data Availability Statement

Data are not publicly available as consent was not obtained from participants, however, data may be shared on a case-by-case basis if a formal data sharing agreement is entered into, by contacting either the corresponding author or the Leeds Institute of Health Sciences.

Notes

  1. The two attributes were relapse severity and chance of additional long-term and/or life-threatening medical condition over 4 years.

  2. ChoiceMetrics.

  3. Participants were told that risks could include low birth weight, premature birth or miscarriage, with the levels of risk presented to participants of similar magnitude as those observed in the literature [51, 52].

  4. Participants who were currently trying to conceive and who were making choices in the now scenario were modelled as being in the trying to conceive scenario.

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Authors and Affiliations

  1. Leeds Institute of Health Sciences, University of Leeds, Leeds, UK

    Edward J. D. Webb, David Meads & Hilary L. Bekker

  2. School of Law, University of Leeds, Leeds, UK

    Ieva Eskytė

  3. Leeds Teaching Hospitals NHS Trust, Leeds, UK

    Helen L. Ford

  4. 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

    Jeremy Chataway

  5. National Institute for Health Research, University College London Hospitals, Biomedical Research Centre, London, UK

    Jeremy Chataway

  6. Shift.Ms, London, UK

    George Pepper

  7. Centre for Primary Care and Public Health (Unisanté), University of Lausanne, Lausanne, Switzerland

    Joachim Marti

  8. Centre for Decision Research, Leeds University Business School, University of Leeds, Leeds, UK

    Yasmina Okan

  9. Dental Translational and Clinical Research Unit, School of Dentistry, University of Leeds, Leeds, UK

    Sue H. Pavitt

  10. The Blizard Institute (Neuroscience, Surgery & Trauma), Queen Mary University of London, Barts and The London School of Medicine & Dentistry, London, UK

    Klaus Schmierer

  11. Clinical Board Medicine (Neuroscience), The Royal London Hospital, Barts Health NHS Trust, London, UK

    Klaus Schmierer

  12. School of Sociology and Social Policy, University of Leeds, Leeds, UK

    Ana Manzano

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Contributions

All authors conceived the study, defined the study aims and contributed to the survey design. EW and DM collected the data. EW conducted the statistical analysis and wrote the first draft of the manuscript, and all authors contributed to and approved the final version.

Corresponding author

Correspondence to Edward J. D. Webb.

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Funding

This study was funded by the UK Multiple Sclerosis Society (grant no. 30). The research is supported by the National Institute for Health Research (NIHR) infrastructure at Leeds. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care. YO acknowledges support from a Population Research Fellowship awarded by Cancer Research UK (reference C57775/A22182). JC is supported in part by the National Institute for Health Research, University College London Hospitals, Biomedical Research Centre, London, UK.

Conflict of interest

Jeremy Chataway has received support from the Efficacy and Mechanism Evaluation Programme and Health Technology Assessment Programme (NIHR); UK Multiple Sclerosis Society and National Multiple Sclerosis Society; and the Rosetrees Trust. In the last 3 years, he has been a local principal investigator for trials in MS funded by Receptos, Novartis and Biogen Idec, and has received an investigator grant from Novartis outside this work. He has taken part in Advisory Boards/consultancy for Roche, Merck, MedDay, Biogen and Celgene. Klaus Schmierer has received consulting fees from Biogen, Merck, Novartis and Roche, and has received payments for lecturing activities from Biogen, Merck, Novartis, Roche and Teva. Hilary L. Bekker provides guidance, based on her academic expertise in medical decision making, to health policy organisations, patient advocacy groups, health professionals and health scientists on research methods and techniques to develop and evaluate patient decision aids and shared decision making interventions. Her time and expenses in attending meetings, carrying out evaluations and collaborating with other projects are remunerated. She does not gain financially from the outcomes or outputs of these collaborations. Helen Ford has received support from the Health Technology Assessment Programme (NIHR) and the UK MS Society. In the past 3 years, Helen Ford has been a local principal investigator for trials in MS funded by Novartis, Roche, and Biogen Idec and has taken part in advisory boards and consultancy for Merck, Teva, Biogen, and Novartis. Edward Webb, David Meads, Ieva Eskytė, George Pepper, Joachim Marti, Yasmina Okan, Sue Pavitt, and Ana Manzano have no conflicts of interest to declare.

Informed consent

All participants gave informed consent before completing the survey, as well as consent to merge their responses with data from the UK MS Register.

Ethics Approval

Approval for this study was given by a National Health Service (NHS) Research Ethics Committee.

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Webb, E.J.D., Meads, D., Eskytė, I. et al. The Impact of Reproductive Issues on Preferences of Women with Relapsing Multiple Sclerosis for Disease-Modifying Treatments. Patient 13, 583–597 (2020). https://doi.org/10.1007/s40271-020-00429-4

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