Contributions
Abstract: EP1756
Type: ePoster
Abstract Category: Therapy - disease modifying - 29 Risk management for disease modifying treatments
Background: although many drugs are available for treating multiple sclerosis (MS), and many guidelines published to guide physicians on the best therapeutically choice, the practice of medicine is still dependent on human contact and influenced by emotional and personal history of the individual, and thus the perception of disease severity and the risk-taking behavior might change from one culture to another.
Goals: To investigate the perception of MS severity in a cohort of Brazilian patients and access their knowledge of the risks associated to natalizumab (NTZ), their willingness to accept the risks associated with hypothetical drug's profiles, and to compare to two previously presented cohorts
(Heensen 2010, Germany; Tur 2013, Spain).
Methods: We consecutively interviewed 96 patients with relapsing-remitting MS from 2 centres (São Paulo and Goiás) with a standardized questionnaire, aiming to get their impressions about MS severity, the risks resulting from NTZ treatment and the factors involved in risk perception and decision making upon the choice of drugs with hypothetical risk profiles of severe adverse events from 1:2,000,000
(very low) to 1:50 (very high), as previously performed by Tur (Tur 2013). Answers were given as multiple choices or visual analogic scale.
Results: mean age and disease duration were 39.3 and 9.1 years, and mean EDSS 2.6. All patients have received at least one disease modifying therapy for MS (20 used NTZ). MS was perceived as a very severe disease (VAS 7.3; 0=not severe, 10=most severe) and the risk of developing progressive multifocal leukoencephalopathy due to NTZ as moderate to high (VAS 5.9, 0=very low; 10=very high). 76% of the patients considered a risk of 1:1,000 or higher impeditive for the use of NTZ. Older age was the only variable associated to higher risk acceptance. When comparing the willingness to receive a hypothetical drug, our patients disclosed a more conservative profile than German (Heesen) and Spanish (Tur) patients.
Conclusion: Brazilian patients in these centres perceive MS severity and PML risk associate to NTZ similarly than elsewhere, but their willingness to take risks is more conservative compared to European patients. This should be considered when discussing therapeutic options with the patients and might have an influence in guidelines adaptations to populations with distinctive cultural background
Disclosure:
Carolina Azze Franco has received a scientific scholarship from FAPESP
Isaac Elias has nothing to disclose
Andreia Mendonça has nothing to disclose
Lorraine Fiama Diniz Carvalho has nothing to disclose
Denise Sisterolli has nothing to disclose
Mar Tintoré received speaking honoraria and travel expenses for scientific meetings in the past with Amirall, Bayer, Biogen Idec, Genzyme, Merck Serono, Novartis, Sanofi-Aventis, Roche and Teva.
Carmen Tur has received a post-doctoral research ECTRIMS fellowship (2015). She has also received honoraria and support for travelling from Teva Pharmaceuticals Europe and Ismar Healthcare.
Enedina Maria Lobato de Oliveira has received speaker fee from Teva, Biogen, Genzyme and travel grant form Merck.
Denis Bichuetti has received speaking/consulting honoraria from Bayer Health Care, Biogen Idec, Merck Serono, Genzyme-Sanofi, TEVA and Roche and had travel expenses to scientific meetings sponsored by Bayer Health Care, Merck Serono, TEVA and Roche.
Abstract: EP1756
Type: ePoster
Abstract Category: Therapy - disease modifying - 29 Risk management for disease modifying treatments
Background: although many drugs are available for treating multiple sclerosis (MS), and many guidelines published to guide physicians on the best therapeutically choice, the practice of medicine is still dependent on human contact and influenced by emotional and personal history of the individual, and thus the perception of disease severity and the risk-taking behavior might change from one culture to another.
Goals: To investigate the perception of MS severity in a cohort of Brazilian patients and access their knowledge of the risks associated to natalizumab (NTZ), their willingness to accept the risks associated with hypothetical drug's profiles, and to compare to two previously presented cohorts
(Heensen 2010, Germany; Tur 2013, Spain).
Methods: We consecutively interviewed 96 patients with relapsing-remitting MS from 2 centres (São Paulo and Goiás) with a standardized questionnaire, aiming to get their impressions about MS severity, the risks resulting from NTZ treatment and the factors involved in risk perception and decision making upon the choice of drugs with hypothetical risk profiles of severe adverse events from 1:2,000,000
(very low) to 1:50 (very high), as previously performed by Tur (Tur 2013). Answers were given as multiple choices or visual analogic scale.
Results: mean age and disease duration were 39.3 and 9.1 years, and mean EDSS 2.6. All patients have received at least one disease modifying therapy for MS (20 used NTZ). MS was perceived as a very severe disease (VAS 7.3; 0=not severe, 10=most severe) and the risk of developing progressive multifocal leukoencephalopathy due to NTZ as moderate to high (VAS 5.9, 0=very low; 10=very high). 76% of the patients considered a risk of 1:1,000 or higher impeditive for the use of NTZ. Older age was the only variable associated to higher risk acceptance. When comparing the willingness to receive a hypothetical drug, our patients disclosed a more conservative profile than German (Heesen) and Spanish (Tur) patients.
Conclusion: Brazilian patients in these centres perceive MS severity and PML risk associate to NTZ similarly than elsewhere, but their willingness to take risks is more conservative compared to European patients. This should be considered when discussing therapeutic options with the patients and might have an influence in guidelines adaptations to populations with distinctive cultural background
Disclosure:
Carolina Azze Franco has received a scientific scholarship from FAPESP
Isaac Elias has nothing to disclose
Andreia Mendonça has nothing to disclose
Lorraine Fiama Diniz Carvalho has nothing to disclose
Denise Sisterolli has nothing to disclose
Mar Tintoré received speaking honoraria and travel expenses for scientific meetings in the past with Amirall, Bayer, Biogen Idec, Genzyme, Merck Serono, Novartis, Sanofi-Aventis, Roche and Teva.
Carmen Tur has received a post-doctoral research ECTRIMS fellowship (2015). She has also received honoraria and support for travelling from Teva Pharmaceuticals Europe and Ismar Healthcare.
Enedina Maria Lobato de Oliveira has received speaker fee from Teva, Biogen, Genzyme and travel grant form Merck.
Denis Bichuetti has received speaking/consulting honoraria from Bayer Health Care, Biogen Idec, Merck Serono, Genzyme-Sanofi, TEVA and Roche and had travel expenses to scientific meetings sponsored by Bayer Health Care, Merck Serono, TEVA and Roche.