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Journal articles on the topic 'Multiple Sclerosis, decision making, pregnancy'

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Published: 4 June 2021

Last updated: 21 February 2023

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1

Portaccio, Emilio, Lucia Moiola, Vittorio Martinelli, Pietro Annovazzi, Angelo Ghezzi, Mauro Zaffaroni, Roberta Lanzillo, et al. "Pregnancy decision-making in women with multiple sclerosis treated with natalizumab." Neurology 90, no. 10 (February 7, 2018): e832-e839. http://dx.doi.org/10.1212/wnl.0000000000005068.

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ObjectiveTo assess the risk of disease reactivation during pregnancy after natalizumab suspension in women with multiple sclerosis (MS).MethodsData of all pregnancies occurring between 2009 and 2015 in patients with MS treated with natalizumab and referring to 19 participating sites were collected and compared with those of pregnancies in untreated patients and patients treated with injectable immunomodulatory agents through a 2-factor repeated measures analysis. Predictors of disease activity were assessed through stepwise multivariable logistic regression models.ResultsA total of 92 pregnancies were tracked in 83 women receiving natalizumab. Among these pregnancies, 74 in 70 women resulted in live births, with a postpartum follow-up of at least 1 year, and were compared with 350 previously published pregnancies. Relapse rate during and after pregnancy was higher in women treated with natalizumab (p < 0.001). In multivariable analysis, longer natalizumab washout period was the only predictor of relapse occurrence during pregnancy (p = 0.001). Relapses in the postpartum year were related to relapses during pregnancy (p = 0.019) and early reintroduction of disease-modifying drugs (DMD; p = 0.021). Disability progression occurred in 16.2% of patients and was reduced by early reintroduction of DMD (p = 0.024).ConclusionsTaken as a whole, our findings indicate that the combination of avoiding natalizumab washout and the early resumption of DMD after delivery could be the best option in the perspective of maternal risk. This approach must take into account possible fetal risks that need to be discussed with the mother and require further investigation.Classification of evidenceThis study provides Class IV evidence that in women with MS, the risk of relapses during pregnancy is higher in those who had been using natalizumab as compared to those who had been using interferon-β or no treatment.

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Alwan, Sura, Magdalena Dybalski, Irene M. Yee, Talitha M. Greenwood, Elaine Roger, Nancy Nadeau, Pierre Duquette, and A. Dessa Sadovnick. "Multiple Sclerosis and Pregnancy: A Comparison Study." Canadian Journal of Neurological Sciences / Journal Canadien des Sciences Neurologiques 40, no. 4 (July 2013): 590–96. http://dx.doi.org/10.1017/s0317167100014724.

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Abstract:Objective:To determine whether different health care systems may affect reproductive decision-making among patients with Multiple Sclerosis (MS), we describe the reproductive practices and attitudes of Canadian MS patients ascertained from the multidisciplinary MS Clinic at Hôpital Notre-Dame in Montreal, Quebec (NDMSC), in comparison to those of matched American selfregistrants from the database of the North American Research Committee on Multiple Sclerosis (NARCOMS).Methods:A total of 665 self-administered questionnaires on reproductive practices were sent out to eligible attendees attending the NDMSC. The short questionnaires were completed and returned to the authors in an anonymous format for analysis.Results:A total of 459 completed questionnaires were returned. The majority of NDMSC respondents (72.5%) and NARCOMS subset (75.2% females), did not encounter a pregnancy following diagnosis of MS. The most common MS-related reason for this decision was “symptoms interfering with parenting” (75.0% for the NDMSC, 72.6% for the NARCOMS). The most commonly reported non-MS-related reason was “a completed family” by the time of diagnosis in both the NDMSC and NARCOMS subset (58.0%, 40.4%, respectively). Concerns about financial issues both related and unrelated to MS were also commonly reported by males and females in both cohorts but significantly more so among the NARCOMS participants.Conclusion:These results indicate that reproductive decisions of MS patients are highly affected by their illness and its associated disability, regardless of the available health care program. Health care providers should discuss their patients' reproductive needs and perceptions to help them make more informed decisions.

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Portaccio, Emilio, Pietro Annovazzi, Angelo Ghezzi, Mauro Zaffaroni, Lucia Moiola, Vittorio Martinelli, Roberta Lanzillo, et al. "Pregnancy decision-making in women with multiple sclerosis treated with natalizumab." Neurology 90, no. 10 (February 7, 2018): e823-e831. http://dx.doi.org/10.1212/wnl.0000000000005067.

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ObjectiveTo assess fetal risk after pregnancy exposure to natalizumab in women with multiple sclerosis (MS), with a specific focus on spontaneous abortion (SA) and congenital anomalies (CA).MethodsData of all pregnancies occurring between 2009 and 2015 in patients with MS treated with natalizumab and referring to 19 participating sites were collected and compared with those of pregnancies in untreated patients and patients treated with injectable immunomodulatory agents. Rates of SA and CA were also compared with those reported in the Italian population. Multivariable logistic and linear regression models were performed.ResultsA total of 92 pregnancies were tracked in 83 women. In the multivariable analysis, natalizumab exposure was associated with SA (odds ratio [OR] 3.9, 95% confidence interval [CI] 1.9–8.5, p < 0.001). However, the rate of SA (17.4%) was within the estimates for the general population, as well as the rate of major CA (3.7%). Moreover, exposure to natalizumab and interferon-β (IFN-β) was associated with lower length and weight of the babies (p < 0.001).ConclusionOur results showed that natalizumab exposure to up 12 weeks of gestation is associated with an increased risk of SA, although within the limits expected in the general population, whereas the risk of CA needs further investigation. Taking into account the high risk of disease reactivation after natalizumab suspension, pregnancy could be planned continuing natalizumab while strictly monitoring conception.Classification of evidenceThis study provides Class III evidence that in women with MS, natalizumab exposure increases the risk of spontaneous abortion as compared to IFN-β-exposed or untreated patients (OR 3.9, 95% CI 1.9–8.5).

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Prunty, M., L. Sharpe, P. Butow, and G. Fulcher. "The motherhood choice: Themes arising in the decision-making process for women with multiple sclerosis." Multiple Sclerosis Journal 14, no. 5 (June 2008): 701–4. http://dx.doi.org/10.1177/1352458507086103.

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Objective This study aimed to determine the main themes and concerns for women with Multiple Sclerosis when considering motherhood. Method Twenty women with multiple sclerosis from various stages in the decision-making process participated in focus-groups where information was gathered regarding their experiences of making this decision. Results The themes emerging most frequently during the decision-making process were: a) concerns about the mother's own health and well-being; b) well-being of the child; c) coping with parenting; d) societal attitudes; e) experiencing parenting and f) timing and pressure of the decision. Conclusion The results indicate that information regarding the effect of MS on pregnancy and child-rearing and the effect of pregnancy on MS and its progression need to be made more accessible to women. Information would be a valuable resource for women going through this decision-making process.

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Alwan, S., IM Yee, M. Dybalski, C. Guimond, E. Dwosh, TM Greenwood, R. Butler, and AD Sadovnick. "Reproductive decision making after the diagnosis of multiple sclerosis (MS)." Multiple Sclerosis Journal 19, no. 3 (July 3, 2012): 351–58. http://dx.doi.org/10.1177/1352458512452920.

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Objective: This study aimed to determine reproductive practices and attitudes of North Americans diagnosed with multiple sclerosis (MS) and the reasons for their reproductive decision making. Methods: A self-administered questionnaire on reproductive practices was mailed to 13,312 registrants of the North American Research Committee on Multiple Sclerosis (NARCOMS) database who met inclusion criteria for the study. Completed questionnaires were then returned to the authors in an anonymous format for analysis. Results: Among 5949 participants, the majority of respondents (79.1%) did not become pregnant following diagnosis of MS. Of these, 34.5% cited MS-related reasons for this decision. The most common MS-related reasons were symptoms interfering with parenting (71.2%), followed by concerns of burdening partner (50.7%) and of children inheriting MS (34.7%). The most common reason unrelated to MS for not having children was that they already have a “completed family” (55.6%). Of the 20.9% of participants who decided to become pregnant (or father a pregnancy) following a diagnosis of MS, 49.5% had two or more pregnancies. Conclusion: This study indicates that an MS diagnosis does not completely deter the consideration of childbearing in MS patients of both genders.

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Wilkie, David Daniel, Alessandra Solari, and Richard St John Nicholas. "The impact of the face-to-face consultation on decisional conflict in complex decision-making in multiple sclerosis: A pilot study." Multiple Sclerosis Journal - Experimental, Translational and Clinical 6, no. 4 (October 2020): 205521732095980. http://dx.doi.org/10.1177/2055217320959802.

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Background The role of face-to-face consultations in medicine is increasingly being challenged. Disease activity, national guidelines, life goals e.g. pregnancy, multiple therapies and side effects need to be considered on starting disease modifying treatments (DMTs) in people with multiple sclerosis (pwMS). Objectives We studied the impact of a face-to-face consultation on decision making, using decisional conflict (DC) as the primary outcome. Methods Prospective cohort study of 73 pwMS attending clinics who were making decisions about DMTs followed for one year. Prerequisites and consultation features were measured with the SURE scale for DC used as the primary outcome at baseline and at one year. Results The patient activation measure (PAM) was the only driver prior to the consultation associated with DC (p = 0.02) showing those less engaged were more likely to have DC. Overall, 51/73 (70%) of people made their treatment decision or reinforced a former decision during the consultation. We found making a treatment decision between the original consultation and the follow-up was associated with resolving DC (p = 0.008). Conclusions Patient engagement impacts DC but the HCP delivering the optimal Shared Decision Making (SDM) approach is additionally significant in reducing DC. In complex decisions there is a clear role for face-to-face consultations in current practice.

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Lewis, Ariane, and Steven Galetta. "Editors' note: Pregnancy decision-making in women with multiple sclerosis treated with natalizumab: I: Fetal risks." Neurology 91, no. 18 (October 29, 2018): 849.1–849. http://dx.doi.org/10.1212/wnl.0000000000006421.

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Proschmann, Undine, Katja Akgün, and Tjalf Ziemssen. "Reader response: Pregnancy decision-making in women with multiple sclerosis treated with natalizumab: I: Fetal risks." Neurology 91, no. 18 (October 29, 2018): 849.2–850. http://dx.doi.org/10.1212/wnl.0000000000006422.

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Sotgiu, Stefano, Anna Eusebi, Chiara Begliuomini, Franca R. Guerini, and Alessandra Carta. "Reader response: Pregnancy decision-making in women with multiple sclerosis treated with natalizumab: I: Fetal risks." Neurology 91, no. 18 (October 29, 2018): 850. http://dx.doi.org/10.1212/wnl.0000000000006429.

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Portaccio, Emilio, and Maria Pia Amato. "Author response: Pregnancy decision-making in women with multiple sclerosis treated with natalizumab: I: Fetal risks." Neurology 91, no. 18 (October 29, 2018): 851. http://dx.doi.org/10.1212/wnl.0000000000006430.

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Sadovnick, A. Dessa, Robert Carruthers, Maria Houtchens, Alice Schabas, and Penelope Smyth. "Canadian Multiple Sclerosis Pregnancy Study (CANPREG-MS): Rationale and Methodology." Canadian Journal of Neurological Sciences / Journal Canadien des Sciences Neurologiques 47, no. 1 (October 29, 2019): 109–14. http://dx.doi.org/10.1017/cjn.2019.296.

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ABSTRACT:Background:Multiple sclerosis (MS) is the most common cause of neurological disability, other than trauma, among young adults of reproductive age. In contrast to the past, today there is very little lag time from clinical onset to diagnosis. Disease-modifying therapies are also now available outside of clinical trials. However, there is very little evidence-based population data to help an individual with MS make informed decisions with respect to reproductive options.Objective:The objective of this study is to develop a Canada-wide, prospective population-based registry of women with MS who are either trying to become pregnant and/or have become pregnant.Methods:The study represents a “real-world” scenario. Women with MS are invited to participate, regardless of clinical course, therapy, disease duration, and/or disability. The methodology to develop such a registry is very complex making it imperative to understand the design and rationale when interpreting results for clinical purposes.Results:This paper is a comprehensive discussion of the study rationale and methodology.Conclusions:The study is ongoing, with over 100 potential participants. Numerous future publications are envisioned as the study progresses. The present paper is thus designed to be the key referral paper for subsequent publications in which it will not be possible to provide the necessary detailed information on rationale and methodology.

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Massey, Tom, and Owen Pearson. "SEVERE (BUT REVERSIBLE) CERVICAL CORD AND BRAIN IRIS REACTION AFTER DISCONTINUATION OF NATALIZUMAB IN PREGNANCY OF PATIENT WITH MULTIPLE SCLEROSIS." Journal of Neurology, Neurosurgery & Psychiatry 86, no. 11 (October 14, 2015): e4.122-e4. http://dx.doi.org/10.1136/jnnp-2015-312379.33.

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Natalizumab is used to treat highly-active relapsing-remitting multiple sclerosis. It is discontinued in certain clinical situations such as progressive multifocal leucoencephalopathy (PML) and pregnancy. Here we describe a case of cerebral and cervical cord immune reconstitution inflammatory syndrome (IRIS) causing florid CNS inflammation and severe disability in a pregnant patient after discontinuation of natalizumab. The patient was virtually symptom free prior to pregnancy but became bedbound, encephalopathic, hypertonic, and very ataxic after stopping natalizumab. She required 24 hour inpatient nursing care. After minimal response to steroids, clinical rescue was achieved by re-starting natalizumab during pregnancy and accepting a small risk to the foetus. The patient was delivered of a healthy baby girl some months later, and has made a virtually complete recovery. This difficult case highlights many of the dilemmas facing Neurologists as new, effective disease-modifying therapies come to clinic without the longitudinal data to guide decision-making.

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Solari, A. "Participatory decision making in multiple sclerosis." European Journal of Neurology 16, no. 1 (January 2009): 3–4. http://dx.doi.org/10.1111/j.1468-1331.2008.02324.x.

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Colligan, Erica, Abby Metzler, and Ezgi Tiryaki. "Shared decision-making in multiple sclerosis." Multiple Sclerosis Journal 23, no. 2 (September 28, 2016): 185–90. http://dx.doi.org/10.1177/1352458516671204.

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In a healthcare environment that is trying to achieve better clinical outcomes and patient satisfaction, shared decision-making is a well-established concept that is gaining more interest. Multiple sclerosis is a preference-sensitive condition and provides the opportunity to implement decision aids at various decision points in the disease process. Literature about patient education and outcomes of shared decision aids in multiple sclerosis has been growing over the last decade. In this topical review, we present an overview of the current literature on shared decision-making in multiple sclerosis. While limitations to the generalizability and applicability of decision aids exist, there is evidence that decision aids and shared decision-making can be valuable tools in the clinical care of multiple sclerosis patients.

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Morgante, Linda, Gail Hartley, Diane Lowden, Marie Namey, Theresa LaRocca, and Jan Shilling. "Decision Making in Multiple Sclerosis: Theory to Practice." International Journal of MS Care 8, no. 4 (January 1, 2006): 113–20. http://dx.doi.org/10.7224/1537-2073-8.4.113.

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Multiple sclerosis (MS) is an uncertain disease that manifests itself in neurological symptoms unique to each individual. People with MS and their families experience the day-to-day variability of the disease and often face difficult decisions regarding their care. Decisions include opting for a disease-modifying therapy soon after the diagnosis of MS is confirmed, choosing various pharmaceutical and nonpharmaceutical treatments for managing the symptoms that result, changing therapies and selecting alternatives when prescribed treatments are not successful, and determining whether to enter a clinical trial of a promising medication. When new therapies become available, nurses are faced with the important task of clarifying expectations, helping patients understand the risks and benefits of the new agent and, if appropriate, the rationale for continuing on their current regimen rather than switching therapies. Patients should be taught to appraise how they are doing on their current treatment and then weigh the evidence of something new in the light of their personal disease course and information available from the media and from peers. A framework for helping patients and families to make complicated decisions is an important step in continuing to provide high-quality care. This can be considered a new domain of MS nursing—one that includes consideration of the patient's hopes and dreams combined with the reality of the evidence. Principles of adult learning, cultural sensitivity, and state-of-the-art nursing knowledge are needed by MS nurses more than ever. The future of MS treatment is one of optimism despite its complexity.

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Tracy, Victoria L., Michael R. Basso, Daniel C. Marson, Dennis R. Combs, and Douglas M. Whiteside. "Capacity for financial decision making in multiple sclerosis." Journal of Clinical and Experimental Neuropsychology 39, no. 1 (July 19, 2016): 46–57. http://dx.doi.org/10.1080/13803395.2016.1201050.

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Smeltzer, Suzanne C. "Reproductive Decision Making in Women with Multiple Sclerosis." Journal of Neuroscience Nursing 34, no. 3 (June 2002): 145–57. http://dx.doi.org/10.1097/01376517-200206000-00007.

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Simioni, S., C. Ruffieux, J. Kleeberg, L. Bruggimann, J. M. Annoni, and M. Schluep. "Preserved decision making ability in early multiple sclerosis." Journal of Neurology 255, no. 11 (November 2008): 1762–69. http://dx.doi.org/10.1007/s00415-008-0025-5.

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Neuhaus, Mireille, Pasquale Calabrese, and Jean-Marie Annoni. "Decision-Making in Multiple Sclerosis Patients: A Systematic Review." Multiple Sclerosis International 2018 (2018): 1–9. http://dx.doi.org/10.1155/2018/7835952.

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Background. Multiple sclerosis (MS) is frequently associated with cognitive and behavioural deficits. A growing number of studies suggest an impact of MS on decision-making abilities. The aim of this systematic review was to assess if (1) performance of MS patients in decision-making tasks was consistently different from controls and (2) whether this modification was associated with cognitive dysfunction and emotional alterations.Methods. The search was conducted on Pubmed/Medline database. 12 studies evaluating the difference between MS patients and healthy controls using validated decision-making tasks were included. Outcomes considered were quantitative (net scores) and qualitative measurements (deliberation time and learning from feedback).Results. Quantitative and qualitative decision-making impairment in MS was present in 64.7% of measurements. Patients were equally impaired in tasks for decision-making under risk and ambiguity. A correlation to other cognitive functions was present in 50% of cases, with the highest associations in the domains of processing speed and attentional capacity.Conclusions. In MS patients, qualitative and quantitative modifications may be present in any kind of decision-making task and can appear independently of other cognitive measures. Since decision-making abilities have a significant impact on everyday life, this cognitive aspect has an influential importance in various MS-related treatment settings.

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Heesen, Christoph, and Anne Christin Rahn. "Guest Editorial: Shared Decision Making in Managing Multiple Sclerosis." International Journal of MS Care 20, no. 6 (November 1, 2018): v—vi. http://dx.doi.org/10.7224/1537-2073.2018-098.

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Azcárraga-Guirola, Elisa, Yaneth Rodríguez-Agudelo, Julia Velázquez-Cardoso, Yamel Rito-García, and Rodolfo Solís-Vivanco. "Electrophysiological correlates of decision making impairment in multiple sclerosis." European Journal of Neuroscience 45, no. 2 (November 25, 2016): 321–29. http://dx.doi.org/10.1111/ejn.13465.

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Confavreux, C., S. Vukusic, J. Grimaud, and T. Moreau. "Clinical progression and decision making process in multiple sclerosis." Multiple Sclerosis 5, no. 4 (April 1, 1999): 212–15. http://dx.doi.org/10.1191/135245899678846104.

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SIMIONI, SAMANTA, CHRISTIANE RUFFIEUX, JOERG KLEEBERG, LAURE BRUGGIMANN, RENAUD A. DU PASQUIER, JEAN-MARIE ANNONI, and MYRIAM SCHLUEP. "Progressive decline of decision-making performances during multiple sclerosis." Journal of the International Neuropsychological Society 15, no. 2 (March 2009): 291–95. http://dx.doi.org/10.1017/s1355617709090262.

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AbstractThe purpose of this study was to evaluate longitudinally, using the Iowa Gambling Task (IGT), the dynamics of decision-making capacity at a two-year interval (median: 2.1 years) in a group of patients with multiple sclerosis (MS) (n = 70) and minor neurological disability [Expanded Disability Status Scale (EDSS) ≤ 2.5 at baseline]. Cognition (memory, executive functions, attention), behavior, handicap, and perceived health status were also investigated. Standardized change scores [(score at retest-score at baseline)/standard deviation of baseline score] were computed. Results showed that IGT performances decreased from baseline to retest (from 0.3, SD = 0.4 to 0.1, SD = 0.3, p = .005). MS patients who worsened in the IGT were more likely to show a decreased perceived health status and emotional well-being (SEP-59; p = .05 for both). Relapsing rate, disability progression, cognitive, and behavioral changes were not associated with decreased IGT performances. In conclusion, decline in decision making can appear as an isolated deficit in MS. (JINS, 2009, 15, 291–295.)

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Confavreux, C., S. Vukusic, J. Grimaud, and T. Moreau. "Clinical progression and decision making process in multiple sclerosis." Multiple Sclerosis Journal 5, no. 4 (August 1999): 212–15. http://dx.doi.org/10.1177/135245859900500403.

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Fitzpatrick, Ben, and Neal F. Cook. "Empowering decision-making in cannabis use in multiple sclerosis." British Journal of Neuroscience Nursing 7, no. 6 (December 2011): 707–12. http://dx.doi.org/10.12968/bjnn.2011.7.6.707.

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Dhumal, T., A. R. Schmitt, G. V. Desai, and K. M. Kamal. "PND79 SHARED DECISION MAKING AND USE OF DECISION AIDS IN MULTIPLE SCLEROSIS." Value in Health 22 (May 2019): S285. http://dx.doi.org/10.1016/j.jval.2019.04.1352.

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Alonso, Ricardo Nicolás, Aníbal Chertcoff, María Bárbara Eizaguirre, Johana Bauer, Felisa Leguizamón, María Celeste Curbello, Fátima Pagani Cassará, et al. "Decision making process in multiple sclerosis: An Argentine pilot study." Multiple Sclerosis and Related Disorders 61 (May 2022): 103751. http://dx.doi.org/10.1016/j.msard.2022.103751.

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Grippa, Elisabetta, Manuela Sellitto, Cristina Scarpazza, Flavia Mattioli, and Giuseppe di Pellegrino. "Multiple sclerosis reduces sensitivity to immediate reward during decision making." Behavioral Neuroscience 131, no. 4 (August 2017): 325–36. http://dx.doi.org/10.1037/bne0000206.

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Heesen, C., J. Kasper, S. Köpke, T. Richter, J. Segal, and I. Mühlhauser. "Informed shared decision making in multiple sclerosis—inevitable or impossible?" Journal of the Neurological Sciences 259, no. 1-2 (August 2007): 109–17. http://dx.doi.org/10.1016/j.jns.2006.05.074.

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Sepúlveda, Maria, Begoña Fernández-Diez, Elena H. Martínez-Lapiscina, Sara Llufriu, Nuria Sola-Valls, Irati Zubizarreta, Yolanda Blanco, et al. "Impairment of decision-making in multiple sclerosis: A neuroeconomic approach." Multiple Sclerosis Journal 23, no. 13 (December 7, 2016): 1762–71. http://dx.doi.org/10.1177/1352458516682103.

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Objective: To assess the decision-making impairment in patients with multiple sclerosis (MS) and how they relate to other cognitive domains. Methods: We performed a cross-sectional analysis in 84 patients with MS, and 21 matched healthy controls using four tasks taken from behavioral economics: (1) risk preferences, (2) choice consistency, (3) delay of gratification, and (4) rate of learning. All tasks were conducted using real-world reward outcomes (food or money) in different real-life conditions. Participants underwent cognitive examination using the Brief Repeatable Battery-Neuropsychology. Results: Patients showed higher risk aversion (general propensity to choose the lottery was 0.51 vs 0.64, p = 0.009), a trend to choose more immediate rewards over larger but delayed rewards ( p = 0.108), and had longer reactions times ( p = 0.033). Choice consistency and learning rates were not different between groups. Progressive patients chose slower than relapsing patients. In relation to general cognitive impairments, we found correlations between impaired decision-making and impaired verbal memory ( r = 0.29, p = 0.009), visual memory ( r = −0.37, p = 0.001), and reduced processing speed ( r = −0.32, p = 0.001). Normalized gray matter volume correlated with deliberation time ( r = −0.32, p = 0.005). Conclusion: Patients with MS suffer significant decision-making impairments, even at the early stages of the disease, and may affect patients’ quality and social life.

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Sponiar, Martine, Louise Sharpe, Phyllis Butow, and Gary Fulcher. "Reproductive Choices of Women With Multiple Sclerosis." International Journal of MS Care 9, no. 1 (January 1, 2007): 9–12. http://dx.doi.org/10.7224/1537-2073-9.1.9.

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A decision aid may be needed for women with multiple sclerosis (MS) in making family-planning choices. Four hundred sixty-one women responded to a mailing asking them where they were in deciding whether to have children. The mailing was sent to female members of the MS Societies in New South Wales and Victoria, Australia, who were between 20 and 40 years of age. Results showed that 46% of respondents were currently unsure about whether they would start, forego, or enlarge their families. More women with relapsing-remitting MS and women who were unsure of their MS type were undecided about motherhood than those with primary progressive and secondary progressive MS. The results indicate that a decision-making tool to assist women with family planning may be useful.

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Keegan, B. "Therapeutic Decision Making in a New Drug Era in Multiple Sclerosis." Seminars in Neurology 33, no. 01 (May 25, 2013): 005–12. http://dx.doi.org/10.1055/s-0033-1345709.

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Cocco, Eleonora, Alberto Caoci, Lorena Lorefice, and Maria Giovanna Marrosu. "Perception of risk and shared decision making process in multiple sclerosis." Expert Review of Neurotherapeutics 17, no. 2 (August 4, 2016): 173–80. http://dx.doi.org/10.1080/14737175.2016.1217155.

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Muhlert, Nils, Varun Sethi, Lisa Cipolotti, Hamied Haroon, Geoff J. M. Parker, Tarek Yousry, Claudia Wheeler-Kingshott, David Miller, Maria Ron, and Declan Chard. "The grey matter correlates of impaired decision-making in multiple sclerosis." Journal of Neurology, Neurosurgery & Psychiatry 86, no. 5 (July 8, 2014): 530–36. http://dx.doi.org/10.1136/jnnp-2014-308169.

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Murray, Cynthia L., Michelle Ploughman, Chelsea Harris, Stephen Hogan, Michelle Murdoch, and Mark Stefanelli. "The Liberation Procedure Decision-Making Experience for People With Multiple Sclerosis." Global Qualitative Nursing Research 1 (May 8, 2014): 233339361455141. http://dx.doi.org/10.1177/2333393614551413.

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Hoffmann, Janina A., Lena Bareuther, Roger Schmidt, and Christian Dettmers. "The relation between memory and decision-making in multiple sclerosis patients." Multiple Sclerosis and Related Disorders 37 (January 2020): 101433. http://dx.doi.org/10.1016/j.msard.2019.101433.

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Lavorgna, Luigi, Hilary Worton, Susan Russell, and Dominic Jack. "Family Planning Decision Making is Affected in People with Multiple Sclerosis." Multiple Sclerosis and Related Disorders 37 (January 2020): 101596. http://dx.doi.org/10.1016/j.msard.2019.11.071.

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Giordano, Andrea, Katia Mattarozzi, Eugenio Pucci, Maurizio Leone, Federica Casini, Laura Collimedaglia, and Alessandra Solari. "Participation in medical decision-making: Attitudes of Italians with multiple sclerosis." Journal of the Neurological Sciences 275, no. 1-2 (December 2008): 86–91. http://dx.doi.org/10.1016/j.jns.2008.07.026.

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Knox, Katherine B., Aman Saini, and Michael C. Levin. "The Dilemma of When to Stop Disease-Modifying Therapy in Multiple Sclerosis." International Journal of MS Care 22, no. 2 (March 1, 2020): 75–84. http://dx.doi.org/10.7224/1537-2073.2018-107.

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Abstract Background: Disease-modifying therapy (DMT) has changed the landscape of multiple sclerosis (MS) care. However, there is lack of consensus on the duration of treatment and the selection of individuals most likely to benefit from continued treatment. Current evidence, practice guidelines, health policy, and ethical considerations presented together may further inform challenging clinical decision making and future directions. The objectives of this study were to conduct a narrative review of original research and practice guideline recommendations on discontinuation of DMTs in MS; to collect information regarding Canadian regional reimbursement policies for DMT coverage in MS; and to present ethical considerations applicable to such decision making. Methods: A literature review was conducted of the MEDLINE/PubMed, OneFile (GALE), Scopus (Elsevier), and ProQuest Biological Science Collection databases. Data regarding Canadian regional reimbursement policies for DMT coverage in MS were collected from the ministry/government websites. Ethical considerations were reviewed in the context of the identified evidence, guidelines, and policies. Results: The literature lacks evidence from prospective randomized controlled trials that directly addresses the issue of discontinuation of DMTs in MS. Current practice guidelines advocate the vital role of patient choice in decision making. There are regional variations in Expanded Disability Status Scale criteria scores for continuing MS DMT coverage among Canadian provinces/territories. Conclusions: In the absence of strong evidence on discontinuation of DMTs, shared decision making and consideration of the ethical complexities could help in the decision-making process.

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Cofield, Stacey S., Nina Thomas, Tuula Tyry, Robert J. Fox, and Amber Salter. "Shared Decision Making and Autonomy Among US Participants with Multiple Sclerosis in the NARCOMS Registry." International Journal of MS Care 19, no. 6 (November 1, 2017): 303–12. http://dx.doi.org/10.7224/1537-2073.2016-091.

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Background: Treatment decisions in multiple sclerosis (MS) are affected by many factors and are made by the patient, doctor, or both. With new disease-modifying therapies (DMTs) emerging, the complexity surrounding treatment decisions is increasing, further emphasizing the importance of understanding decision-making preferences. Methods: North American Research Committee on Multiple Sclerosis (NARCOMS) Registry participants completed the Fall 2014 Update survey, which included the Control Preferences Scale (CPS). The CPS consists of five images showing different patient/doctor roles in treatment decision making. The images were collapsed to three categories: patient-centered, shared, and physician-centered decision-making preferences. Associations between decision-making preferences and demographic and clinical factors were evaluated using multivariable logistic regression. Results: Of 7009 participants, 79.3% were women and 93.5% were white (mean [SD] age, 57.6 [10.3] years); 56.7% reported a history of relapses. Patient-centered decision making was most commonly preferred by participants (47.9%), followed by shared decision making (SDM; 42.8%). SDM preference was higher for women and those taking DMTs and increased with age and disease duration (all P < .05). Patient-centered decisions were most common for respondents not taking a DMT at the time of the survey and were preferred by those who had no DMT history compared with those who had previously taken a DMT (P < .0001). There was no difference in SDM preference by current MS disease course after adjusting for other disease-related factors. Conclusions: Responders reported most commonly considering their doctor's opinion before making a treatment decision and making decisions jointly with their doctor. DMT use, gender, and age were associated with decision-making preference.

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Amarenco, Gérard, Emmanuel Chartier-Kastler, Pierre Denys, Jacques Labat Jean, Marianne de Sèze, and Catherine Lubetzski. "First-line urological evaluation in multiple sclerosis: validation of a specific decision-making algorithm." Multiple Sclerosis Journal 19, no. 14 (May 22, 2013): 1931–37. http://dx.doi.org/10.1177/1352458513489758.

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Background: Urinary disorders that lead to urological complications are frequent in multiple sclerosis, resulting in diminished quality of life. Urinary management guidelines are scarce and targeted to neuro-urology specialists. Objective: This study aimed to construct and validate an algorithm dedicated to neurologists and general practitioners to facilitate first-line evaluation and treatment of urinary disorders associated with multiple sclerosis. Methods: 49 items concerning urological symptom evaluation and therapeutic strategies were derived from literature analysis and evaluated by an expert panel. The Delphi method established consensus between the experts and allowed development of the First-Line Urological Evaluation in Multiple Sclerosis (FLUE-MS) algorithm. Two questions from the Urinary Bothersome Questionnaire in Multiple Sclerosis were included and their validation to verify comprehensiveness and acceptability was also conducted. Results: Three rounds of expert review obtained consensus of all 49 items and allowed finalisation of the algorithm. Comprehension and acceptability of two Urinary Bothersome Questionnaire in Multiple Sclerosis questions were verified (mean comprehensiveness score: 1.99/2 [99.7% total comprehensiveness], mean acceptability score: 1.99/2 [99.1% complete acceptability]). Conclusion: The FLUE-MS algorithm was designed for neurologists and general practitioners, enabling identification of ‘red flags’, timely patient referral to specialist neuro-urology units, and appropriate first-line therapy.

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Bethoux, Francois. "Improving Ambulation in Multiple Sclerosis." US Neurology 05, no. 01 (2009): 50. http://dx.doi.org/10.17925/usn.2009.05.01.50.

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Ambulation is frequently affected by multiple sclerosis (MS), and is one of the most valued neurological functions among individuals with MS. While walking speed and walking distance have been used for decades as indicators of disease progression, other aspects of gait disturbance are not routinely assessed, and the impact of walking limitations on the daily activities and quality of life of patients is not fully understood. Recently, rehabilitation techniques, devices, and medications that aim directly at improving walking performance have been tested in individuals with MS. At the same time, clinician-rated and patient-reported measures of ambulation are being validated in this patient population. As a consequence of these advances, clinicians can draw from a growing body of evidence to enhance decision-making and outcome measurement when trying to help MS patients fight one of the most visible consequences of their disease.

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Muhlert, N., V. Sethi, M. Ron, L. Cipolotti, G. Parker, H. Haroon, T. Yousry, C. Wheeler-Kingshott, D. Miller, and D. Chard. "IMPAIRED DECISION-MAKING AND DIFFUSION ORIENTATIONAL COMPLEXITY IN PEOPLE WITH MULTIPLE SCLEROSIS." Journal of Neurology, Neurosurgery & Psychiatry 84, no. 9 (August 6, 2013): e1-e1. http://dx.doi.org/10.1136/jnnp-2013-306103.21.

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Simioni, Samanta, Myriam Schluep, Nadège Bault, Giorgio Coricelli, Joerg Kleeberg, Renaud A. Du Pasquier, Markus Gschwind, Patrik Vuilleumier, and Jean-Marie Annoni. "Multiple Sclerosis Decreases Explicit Counterfactual Processing and Risk Taking in Decision Making." PLoS ONE 7, no. 12 (December 5, 2012): e50718. http://dx.doi.org/10.1371/journal.pone.0050718.

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Phan, Yen Hoang Le, Richard De Abreu Lourenco, Marion Haas, and Naomi van der Linden. "Key considerations in reimbursement decision-making for multiple sclerosis drugs in Australia." Multiple Sclerosis and Related Disorders 25 (October 2018): 144–49. http://dx.doi.org/10.1016/j.msard.2018.07.020.

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Weygandt, Martin, Katharina Wakonig, Janina Behrens, Lil Meyer-Arndt, Eveline Söder, Alexander U. Brandt, Judith Bellmann-Strobl, et al. "Brain activity, regional gray matter loss, and decision-making in multiple sclerosis." Multiple Sclerosis Journal 24, no. 9 (June 28, 2017): 1163–73. http://dx.doi.org/10.1177/1352458517717089.

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Background: Decision-making (DM) abilities deteriorate with multiple sclerosis (MS) disease progression which impairs everyday life and is thus clinically important. Objective: To investigate the underlying neurocognitive processes and their relation to regional gray matter (GM) loss induced by MS. Methods: We used a functional magnetic resonance imaging (fMRI) Iowa Gambling Task to measure DM-related brain activity in 36 MS patients and 21 healthy controls (HC). From this activity, we determined neural parameters of two cognitive stages, a deliberation (“choice”) period preceding a choice and a post-choice (“feedback”) stage reporting decision outcomes. These measures were related to DM separately in intact and damaged GM areas as determined by a voxel-based morphometry analysis. Results: Severely affected patients (with high lesion burden) showed worse DM-learning than HC ( t = −1.75, p = 0.045), moderately affected (low lesion burden) did not. Activity in the choice stage in intact insular ( t = 4.60, pFamily-Wise Error [FWE] corrected = 0.034), anterior cingulate ( t = 4.50, pFWE = 0.044), and dorsolateral prefrontal areas ( t = 4.43, pFWE = 0.049) and in insular areas with GM loss ( t = 3.78, pFWE = 0.011) was positively linked to DM performance across patients with severe tissue damage and HC. Furthermore, activity in intact orbitofrontal areas was positively linked to DM-learning during the feedback stage across these participants ( t = 4.49, pFWE = 0.032). During none of the stages, moderately affected patients showed higher activity than HC, which might have indicated preserved DM due to compensatory activity. Conclusion: We identified dysregulated activity linked to impairment in specific cognitive stages of reward-related DM. The link of brain activity and impaired DM in areas with MS-induced GM loss suggests that this deficit might be tightly coupled to MS neuropathology.

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Farez, M. F., L. Crivelli, R. Leiguarda, and J. Correale. "Decision-making impairment in patients with multiple sclerosis: a case-control study." BMJ Open 4, no. 7 (July 29, 2014): e004918-e004918. http://dx.doi.org/10.1136/bmjopen-2014-004918.

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Heesen, Christoph, S. Köpke, T. Richter, and J. Kasper. "Shared decision making and selfmanagement in multiple sclerosis – a consequence of evidence." Journal of Neurology 254, S2 (May 2007): II116—II121. http://dx.doi.org/10.1007/s00415-007-2028-z.

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Kleeberg, J�rg, Laure Bruggimann, Jean-Marie Annoni, Guy van Melle, Julien Bogousslavsky, and Myriam Schluep. "Altered decision-making in multiple sclerosis: A sign of impaired emotional reactivity?" Annals of Neurology 56, no. 6 (2004): 787–95. http://dx.doi.org/10.1002/ana.20277.

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Lustig, Daniel C., Yonghong Jade Xu, David R. Strauser, and Michael M. MacKay. "The Relationship Between Career Thoughts and Adjustment for Individuals With Multiple Sclerosis." Rehabilitation Counseling Bulletin 61, no. 2 (June 7, 2017): 112–20. http://dx.doi.org/10.1177/0034355217709457.

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The study investigated the relationship between the psychosocial adjustment and dysfunctional career thoughts for adults with multiple sclerosis. The Reactions to Impairment and Disability Inventory measured psychosocial adjustment, and the Career Thoughts Inventory measured dysfunctional career thoughts. The results found that (a) higher levels of depression were associated with higher levels of decision-making confusion and commitment anxiety and (b) higher levels of adjustment were associated with lower levels of decision-making confusion. Rehabilitation counselor implications are discussed.

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