Survey of diagnostic and treatment practices for multiple sclerosis (MS) in Europe. Part 2: Progressive MS, paediatric MS, pregnancy and general management

Fernández, Óscar; Delvecchio, Maurizio; Edan, Gilles; Fredrikson, Sten; Giovannoni, Gavin; Hartung, Hans‐Peter; Havrdová, Eva; Kappos, Ludwig; Pozzilli, Carlo; Soerensen, Per Soelberg; Tackenberg, Björn; Vermersch, P.; Comı, Gıancarlo

doi:10.1111/ene.13581

Cited by 9 publications

(5 citation statements)

References 13 publications

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“…There is no consensus approach on DMT usage in a prospective mother with MS. A recent survey of European MS neurologists showed a near 50/50 divide between those who favored discontinuation of DMT previous to conception in stable relapsing-remitting MS patients and those who did not (Fernández et al, 2018). In our cohort, we found that, in around one third of cases, women and/or physicians opted to maintain DMT while attempting to conceive.…”

Section: Discussionmentioning

confidence: 60%

Pregnancy outcomes in Portuguese women with multiple sclerosis: The PREGNIMS study

Novo

Castelo

Sousa

et al. 2019

Multiple Sclerosis and Related Disorders

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Introduction: Several questions about pregnancy in women with multiple sclerosis (MS) have been discussed, but clarification is still needed in some very practical issues. Portuguese data on this subject remain scattered and need to be analyzed in order to standardize clinical practice. Objective: This study aimed to describe and analyze the impact of MS on pregnancy and perinatal health of children born to Portuguese mothers with the disease. Material and methods: This is a multicenter, retrospective study of a cohort of Portuguese women with MS who were pregnant and who gave birth between 01/01/2011 and 31/12/2015. Demographic and clinical data related to maternal disease, pregnancy progression and events, childbirth and newborn health were collected. Results: Ninety-seven women were recruited and 90 live births were evaluated. The mean maternal age at conception was 32.5 years, and 63.9% had no relapses in the previous year (98.0% had a relapsing-remitting MS and the EDSS score was ≤ 3 in 92.8% of the cases). Only 50.5% of the women had a preconception specific evaluation and 60 children were exposed to immunomodulatory therapies during pregnancy. Nineteen women had relapses during pregnancy. Childbirth was induced in 22.7% of the cases, and the caesarean section rate was 34%. Children exposed to immunomodulatory drugs during pregnancy had a lower birth length (p = 0.014), and there was also a trend toward lower birth weight (p = 0.054) in these newborns. Pre-conception EDSS score negatively correlated with the duration of pregnancy (r = -0.22; p = 0.029), weight (r = -0.23; p = 0.031) and cephalic perimeter at birth (r = -0.24; p = 0.033). There was no relationship between the occurrence of relapses or progression in EDSS score during pregnancy with any variables related to the newborn. Conclusions: In our cohort, it has been confirmed that MS has no negative effect on pregnancy or on children's perinatal health. However, the use of immunomodulatory drugs may have some impact on newborns' somatometric features.

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Section: Discussionmentioning

confidence: 60%

Pregnancy outcomes in Portuguese women with multiple sclerosis: The PREGNIMS study

Novo

Castelo

Sousa

et al. 2019

Multiple Sclerosis and Related Disorders

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“…Formulation of a SPMS diagnosis is not straightforward, nevertheless it is a key prognostic factor that may affect decisions and planning at the health care level (e.g., DMT change or discontinuation, provision of psychosocial support, shift to a multidisciplinary care) (23–25) and at the personal level. For these reasons, a clear and effective communication to the patient is an ethical imperative.…”

Section: Discussionmentioning

confidence: 99%

Conversion to Secondary Progressive Multiple Sclerosis: Patient Awareness and Needs. Results From an Online Survey in Italy and Germany

et al. 2019

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Background: Few studies have investigated the experiences of patients around the conversion to secondary progressive multiple sclerosis (SPMS). ManTra is a mixed-method, co-production research project conducted in Italy and Germany to develop an intervention for newly-diagnosed SPMS patients. In previous project actions, we identified the needs and experiences of patients converting to SPMS via literature review and qualitative research which involved key stakeholders. Aims: The online patient survey aimed to assess, on a larger and independent sample of recently-diagnosed SPMS patients: (a) the characteristics associated to patient awareness of SPMS conversion; (b) the experience of conversion; (c) importance and prioritization of the needs previously identified. Methods: Participants were consenting adults with SPMS since ≤5 years. The survey consisted of three sections: on general and clinical characteristics; on experience of SPMS diagnosis disclosure (aware participants only); and on importance and prioritization of 33 pre-specified needs. Results: Of 215 participants, those aware of their SPMS diagnosis were 57% in Italy vs. 77% in Germany ( p = 0.004). In both countries, over 80% of aware participants received a SPMS diagnosis from the neurologist; satisfaction with SPMS disclosure was moderate to high. Nevertheless, 28–35% obtained second opinions, and 48–56% reported they did not receive any information on SPMS. Participants actively seeking further information were 63% in Germany vs. 31% in Italy ( p < 0.001). Variables independently associated to patient awareness were geographic area (odds ratio, OR 0.32, 95% CI 0.13–0.78 for Central Italy; OR 0.21, 95% CI 0.08–0.58 for Southern Italy [vs. Germany]) and activity limitations (OR 7.80, 95% CI 1.47–41.37 for dependent vs. autonomous patients). All pre-specified needs were scored a lot or extremely important, and two prioritized needs were shared by Italian and German patients: “physiotherapy” and “active patient care involvement.” The other two differed across countries: “an individualized health care plan” and “information on social rights and policies” in Italy, and “psychological support” and “cognitive rehabilitation” in Germany. Conclusions: Around 40% of SPMS patients were not aware of their disease form indicating a need to improve patient-physician communication. Physiotherapy and active patient care involvement were prioritized in both countries.

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“…Acceptance of this strategy by clinicians would likely require a clinical trial [ 100 ] that demonstrates the utility of the I CXCL13 in early MS, especially since neurologists treating MS generally do not use HE-IMDs until they have tried ME-IMDs, and frequently not even then. Fernandez et al [ 101 ] surveyed the treatment practices of 233 neurologists caring for PwMS in 11 European countries. For clinically isolated syndrome they would “never use” HE-IMD even if there were multiple-gad enhancing lesions as well as spinal cord lesions.…”

Section: Two Logical Candidates For Molecular Biomarkers Based On The...mentioning

confidence: 99%

The Brave New World of Early Treatment of Multiple Sclerosis: Using the Molecular Biomarkers CXCL13 and Neurofilament Light to Optimize Immunotherapy

Pachner

2022

Biomedicines

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Multiple sclerosis (MS) is a highly heterogeneous disease involving a combination of inflammation, demyelination, and CNS injury. It is the leading cause of non-traumatic neurological disability in younger people. There is no cure, but treatments in the form of immunomodulatory drugs (IMDs) are available. Experience over the last 30 years has shown that IMDs, also sometimes called disease-modifying therapies, are effective in downregulating neuroinflammatory activity. However, there are a number of negatives in IMD therapy, including potential for significant side-effects and adverse events, uncertainty about long-term benefits regarding disability outcomes, and very high and increasing financial costs. The two dozen currently available FDA-approved IMDs also are heterogeneous with respect to efficacy and safety, especially long-term safety, and determining an IMD treatment strategy is therefore challenging for the clinician. Decisions about optimal therapy have been particularly difficult in early MS, at the time of the initial clinical demyelinating event (ICDE), at a time when early, aggressive treatment would best be initiated on patients destined to have a highly inflammatory course. However, given the fact that the majority of ICDE patients have a more benign course, aggressive immunosuppression, with its attendant risks, should not be administered to this group, and should only be reserved for patients with a more neuroinflammatory course, a decision that can only be made in retrospect, months to years after the ICDE. This quandary of moderate vs. aggressive therapy facing clinicians would best be resolved by the use of biomarkers that are predictive of future neuroinflammation. Unfortunately, biomarkers, especially molecular biomarkers, have not thus far been particularly useful in assisting clinicians in predicting the likelihood of future neuroinflammation, and thus guiding therapy. However, the last decade has seen the emergence of two highly promising molecular biomarkers to guide therapy in early MS: the CXCL13 index and neurofilament light. This paper will review the immunological and neuroscientific underpinnings of these biomarkers and the data supporting their use in early MS and will propose how they will likely be used to maximize benefit and minimize risk of IMDs in MS patients.

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Survey of diagnostic and treatment practices for multiple sclerosis (MS) in Europe. Part 2: Progressive MS, paediatric MS, pregnancy and general management

Cited by 9 publications

References 13 publications

Pregnancy outcomes in Portuguese women with multiple sclerosis: The PREGNIMS study

Pregnancy outcomes in Portuguese women with multiple sclerosis: The PREGNIMS study

Conversion to Secondary Progressive Multiple Sclerosis: Patient Awareness and Needs. Results From an Online Survey in Italy and Germany

The Brave New World of Early Treatment of Multiple Sclerosis: Using the Molecular Biomarkers CXCL13 and Neurofilament Light to Optimize Immunotherapy

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