Risk perception in natalizumab-treated multiple sclerosis patients and their neurologists

Heesen, Christoph; Kleiter, Ingo; Nguyen, Franziska; Schäffler, Nina; Kasper, Jürgen; Köpke, Sascha; Gaissmaier, Wolfgang

doi:10.1177/1352458510379819

Cited by 80 publications

(70 citation statements)

References 19 publications

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“…The comparison between the answers profile for this population and two previously published cohorts with similar methodology 12,13 , revealed that our patients perceive MS severity and the risks associated with natalizumab similarly, but their RAS is lower than for patients from these two European cohorts (Table 4 and the Figure).…”

Section: Resultsmentioning

confidence: 99%

“…Our study was modeled after Tur's work 13 , which is a little different from Heesen's study 12 , restricting direct comparison of this cohort to the German patients. Furthermore, we evaluated a young patient population with a mean disease duration of only nine years, with low-to-moderate disability and with most of them having received only one or two disease modifying drugs.…”

Section: Fox Et Almentioning

confidence: 99%

“…Assessment of the perception of MS severity was performed with a survey containing visual analog scale questions, whose possible values ranged from 0 to 10, as has been used previously 12 . Patients were asked to answer to what extent they judged MS to be a severe disease, where 0 = MS is not at all a severe disease, and 10 = MS is the most severe disease you can think of.…”

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confidence: 99%

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Multiple sclerosis risk perception and acceptance for Brazilian patients

Bichuetti

Franco

Elias

et al. 2018

Arq. Neuro-Psiquiatr.

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The perception of multiple sclerosis (MS) severity and risk associated with therapies might influence shared decision making in different countries. We investigated the perception of MS severity and factors associated with risk acceptance in Brazil in 96 patients with relapsing-remitting MS using a standardized questionnaire and compared this with two European cohorts. Multiple sclerosis was perceived as a very severe disease and the risk of developing progressive multifocal leukoencephalopathy due to natalizumab was seen as moderate to high. Seventy-six percent considered a risk of 1:1,000, or higher, an impediment for natalizumab use. Older age was the only variable associated with higher risk acceptance and our patients showed a more conservative profile than German and Spanish patients. Our patients perceived MS severity and progressive multifocal leukoencephalopathy risk similarly to elsewhere, but their willingness to take risks was more conservative. This should be considered when discussing therapeutic options and it might have an impact on guideline adaptations.

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Section: Resultsmentioning

confidence: 99%

Section: Fox Et Almentioning

confidence: 99%

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confidence: 99%

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Multiple sclerosis risk perception and acceptance for Brazilian patients

Bichuetti

Franco

Elias

et al. 2018

Arq. Neuro-Psiquiatr.

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“…Although most patients seem to be willing to receive high doses of vitamin D (even megadoses, without any scientific evidence for their use), not too many patients seem to be willing to stop smoking, drinking, starting with exercise and weight loss programs. In fact, there are reports clearly showing that patients are willing to run the risk of lifeendangering side effects from immunosuppressive drugs for MS in order to continue with the treatment 57,58 . Furthermore, thousands of patients with MS worldwide were found to be willing to submit themselves to a vascular surgical procedure to treat their MS for which there was no scientific basis 59 .…”

Section: Discussionmentioning

confidence: 99%

Modifiable environmental factors in multiple sclerosis

Fragoso

2014

Arq. Neuro-Psiquiatr.

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Potential environmental modifiable factors involved in multiple sclerosis (MS) include low adherence to treatment, smoking, obesity, low levels of liposoluble vitamins A and D, high consumption of salt, and a sedentary lifestyle. Chronic tobacco use, obesity, sedentarism and insufficient levels of these vitamins all contribute to maintenance of a proinflammatory state. It is unlikely that there will be noticeable improvement in the inflammatory condition of MS if stopping smoking, reducing weight, exercising, increasing vitamin levels are done in an isolated and erratic manner. Modification of each and every one of these environmental risk factors is likely to be an important approach in the management of MS. The present review presents the arguments for an association between these hazardous modifiable factors and the chronic inflammatory state observed in MS.Keywords: multiple sclerosis, smoking, obesity, vitamin D, vitamin A, exercise. RESUMOPotenciais fatores ambientais modificáveis envolvidos na esclerose múltipla (EM) incluem baixa adesão ao tratamento, tabagismo, obesidade, baixos níveis das vitaminas lipossolúveis A e D, e um estilo de vida sedentário. O uso crônico de tabaco, obesidade, sedentarismo e níveis insuficientes destas vitaminas podem todos contribuir para a manutenção de um estado pró-inflamatório. É pouco provável que haja melhora notável na condição inflamatória da EM se a cessação do tabagismo, a redução de peso, exercícios e maiores níveis de vitaminas forem obtidos isoladamente e de maneira errática. A modificação de cada um destes fatores de risco ambientais poderá ser importante parte do manejo eficaz da EM. A presente revisão apresenta argumentos para uma associação entre os fatores modificáveis nocivos e o estado inflamatório crônico observado na EM. It is possible that, with a specific approach to modifiable factors, the use of more aggressive treatment may not be necessary and the patient might thrive on immunomodulatory drugs that have less severe side effects. However, when the patient presents an aggressive form of MS and/or does not respond to immunomodulatory drugs 3 , the immediate reaction is to progress to immunosuppression 4 . Perhaps it is time to consider the modifiable factors in MS when treating a patient. It goes without saying that adequate adherence to treatment needs to have been confirmed before the patient is given second-line therapy with potentially more serious, and even fatal, side effects. Through quitting smoking, losing weight, exercising and maintaining proper serum levels of vitamins A and D, the patient may respond better to all pharmacological treatments. It is, after all, the environmental factors that perpetuate the inflammatory state in MS and, for unknown reasons, these factors are frequently ignored. A summary of the potentially modifiable factors in presented in Table. Departamento de Neurologia, Faculdade de Medicina, Universidade Metropolitana de Santos, Santos SP, Brazil. . The relative risk of developing MS among smokers is almost twi...

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“…112,113 Hence, it is not surprising that patients might be more willing to accept SAEs in return for a reduced risk of disability progression than physicians. 114 Given these differences in treatment perspectives between patients and physicians, neurologists should strongly encourage their patients to formulate their own values and preferences regarding their medical care. 115 In addition, healthcare providers have a duty to ensure patients understand the complex information given to them.…”

Section: How To Integrate the Patient's Treatment Expectations Into Imentioning

confidence: 99%

The clinical perspective: How to personalise treatment in MS and how may biomarkers including imaging contribute to this?

et al. 2016

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Background: Multiple sclerosis (MS) is a highly heterogeneous disease, both in its course and in its response to treatments. Effective biomarkers may help predict disability progression and monitor patients' treatment responses. Objective: The aim of this review was to focus on how biomarkers may contribute to treatment individualisation in MS patients. Methods: This review reflects the content of presentations, polling results and discussions on the clinical perspective of MS during the first and second Pan-European MS Multi-stakeholder Colloquia in Brussels in May 2014 and 2015. Results: In clinical practice, magnetic resonance imaging (MRI) measures play a significant role in the diagnosis and follow-up of MS patients. Together with clinical markers, the rate of MRI-visible lesion accrual once a patient has started treatment may also help to predict subsequent treatment responsiveness. In addition, several molecular (immunological, genetic) biomarkers have been established that may play a role in predictive models of MS relapses and progression. To reach personalised treatment decisions, estimates of disability progression and likely treatment response should be carefully considered alongside the risk of serious adverse events, together with the patient's treatment expectations. Conclusion: Although biomarkers may be very useful for individualised decision making in MS, many are still research tools and need to be validated before implementation in clinical practice.

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Risk perception in natalizumab-treated multiple sclerosis patients and their neurologists

Cited by 80 publications

References 19 publications

Multiple sclerosis risk perception and acceptance for Brazilian patients

Multiple sclerosis risk perception and acceptance for Brazilian patients

Modifiable environmental factors in multiple sclerosis

The clinical perspective: How to personalise treatment in MS and how may biomarkers including imaging contribute to this?

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