ECTRIMS eLearning

Patients' perception about risk and benefit in disease modifying therapies: an Italian multicentric survey
Author(s): ,
M. Turrini
Affiliations:
Multiple Sclerosis Centre, Spedali Civili of Brescia, Montichiari
,
C. Scarpazza
Affiliations:
Multiple Sclerosis Centre, Spedali Civili of Brescia, Montichiari
,
M. Rovaris
Affiliations:
Neuromotor Rehabilitation- Multiple Sclerosis Centre, IRCCS Santa Maria Nascente, Don Carlo Gnocchi Foundation, Milano
,
A. D`Arma
Affiliations:
Neuromotor Rehabilitation- Multiple Sclerosis Centre, IRCCS Santa Maria Nascente, Don Carlo Gnocchi Foundation, Milano
,
G.A. Cavaletti
Affiliations:
Head, Experimental Neurology Unit/Neurology, University Milano-Bicocca/San Gerardo Hospital
,
M. Frigo
Affiliations:
Neurology, San Gerardo Hospital, Monza
,
V.L.A. Torri Clerici
Affiliations:
Department of Neuroimmunology and Neuromuscular Diseases, Neurological Institute C. Besta IRCCS Foundation, Milano, Italy
R. Capra
Affiliations:
Multiple Sclerosis Centre, Spedali Civili of Brescia, Montichiari
ECTRIMS Learn. Turrini M. 10/10/18; 229496; EP1659
Mariavittoria Turrini
Mariavittoria Turrini
Contributions
Abstract

Abstract: EP1659

Type: Poster Sessions

Abstract Category: Therapy - Risk management for disease modifying treatments

Background: Patient's perception of risks and benefits associated with Disease Modifying therapies (DMTs) is relevant for the therapeutic adherence and the impact on the clinical outcome.
Goals: To investigate in a multicentric survey the response of Multiple Sclerosis (MS) DMT treated patient about the risks and benefits.
Methods: A questionnaire was submitted to 708 patients with relapsing-remitting MS. The questionnaire explored the patient's overall satisfaction with DMTs and their awareness of the potential therapy-specific associated Adverse Event (AE).
Results: 505 participants (65% females, mean age=43) completed the survey. A higher percentage of patients treated with second line (SL) DMTs, compared with patients treated with first line (FL) DMTs, declared to be overall satisfied with the therapy (64.8% vs 45.5%, χ2=16.5, p< 0.001) and with the related improvement of the quality of life (QoL) (55.1% vs 32%, χ2=24.6, p< 0.001). The patients of both groups were aware of the AE associated with the DMTs (90.1% vs 93%, χ2=1.2, p=0.2). No difference was found between oral and injective DMTs experience (51.8% vs 46.7%, χ2=0.9, p=0.3), but it is higher for infusive treatment (63.7%) respect to oral (51.8%, χ2=3.5, p=0.06) and injective (46.7%, χ2=8.9, p=0.003) DMTs.
10.47% of FL-DMTs and 25.9% of SL-DMTs patients might consider to interrupt the therapy to avoid AEs (χ2=10, p< 0.001). Regarding the Progressive Multifocal Leukoencephalopathy (PML), 92.8% of Natalizumab (NTZ) patients were aware of the possibility to develop PML, compared to 47.6% of Dimetil Fumarate (DF) (χ2=42.3, p< 0.001) and 67.3% of Fingolimod (FTY) (χ2=16.1, p< 0.001) patients. A lower percentage of patients treated with NTZ (10%) felt higher levels of anxiety about PML, compared with FTY (15%) and DF (20%, χ2=3.6, p=0.05).
Conclusion: Infusive therapies have the highest profile for both satisfaction and QoL, followed by oral and injective ones. The patients prefer to face the risk of AE than to interrupt the therapy and this is particular relevant for NTZ treated patients, where the higher PML risk doesn't match with a similar anxiety. The profile of this cohort of patients suggests that a lower amount of information is related to higher anxiety. This should be considered when discussing therapeutic options with patients, since all these elements can influence adherence.
Disclosure: Dr. Mariavittoria Turrini received lecture fees and travel grants from Novartis, Biogen-Idec.
Dr. Cristina Scarpazza: nothing to disclose
Dr. Marco Rovaris received travel e research grants from Biogen, Merck Serono, Novartis and TEVA
Dr. Alessia D´Arma: nothing to disclose
Dr. Guido Angelo Cavaletti: nothing to disclose
Dr. Maura Frigo: nothing to disclose
Dr. Valentina Liliana Adriana Torri Clerici acted as an Advisory Board member of Novartis, Genzyme and Merck-Serono, received funding for traveling and honoraria for speaking or writing from Teva, Biogen, Genzyme, Merk-Serono and Almirall. She received support for research project by Almirall.
Dr. Ruggero Capra received consulting fees from Novartis, Biogen-Idec and lecture fees and/or travel grants from Novartis, Biogen-Idec, Genzyme and Sanofi-Aventis.

Abstract: EP1659

Type: Poster Sessions

Abstract Category: Therapy - Risk management for disease modifying treatments

Background: Patient's perception of risks and benefits associated with Disease Modifying therapies (DMTs) is relevant for the therapeutic adherence and the impact on the clinical outcome.
Goals: To investigate in a multicentric survey the response of Multiple Sclerosis (MS) DMT treated patient about the risks and benefits.
Methods: A questionnaire was submitted to 708 patients with relapsing-remitting MS. The questionnaire explored the patient's overall satisfaction with DMTs and their awareness of the potential therapy-specific associated Adverse Event (AE).
Results: 505 participants (65% females, mean age=43) completed the survey. A higher percentage of patients treated with second line (SL) DMTs, compared with patients treated with first line (FL) DMTs, declared to be overall satisfied with the therapy (64.8% vs 45.5%, χ2=16.5, p< 0.001) and with the related improvement of the quality of life (QoL) (55.1% vs 32%, χ2=24.6, p< 0.001). The patients of both groups were aware of the AE associated with the DMTs (90.1% vs 93%, χ2=1.2, p=0.2). No difference was found between oral and injective DMTs experience (51.8% vs 46.7%, χ2=0.9, p=0.3), but it is higher for infusive treatment (63.7%) respect to oral (51.8%, χ2=3.5, p=0.06) and injective (46.7%, χ2=8.9, p=0.003) DMTs.
10.47% of FL-DMTs and 25.9% of SL-DMTs patients might consider to interrupt the therapy to avoid AEs (χ2=10, p< 0.001). Regarding the Progressive Multifocal Leukoencephalopathy (PML), 92.8% of Natalizumab (NTZ) patients were aware of the possibility to develop PML, compared to 47.6% of Dimetil Fumarate (DF) (χ2=42.3, p< 0.001) and 67.3% of Fingolimod (FTY) (χ2=16.1, p< 0.001) patients. A lower percentage of patients treated with NTZ (10%) felt higher levels of anxiety about PML, compared with FTY (15%) and DF (20%, χ2=3.6, p=0.05).
Conclusion: Infusive therapies have the highest profile for both satisfaction and QoL, followed by oral and injective ones. The patients prefer to face the risk of AE than to interrupt the therapy and this is particular relevant for NTZ treated patients, where the higher PML risk doesn't match with a similar anxiety. The profile of this cohort of patients suggests that a lower amount of information is related to higher anxiety. This should be considered when discussing therapeutic options with patients, since all these elements can influence adherence.
Disclosure: Dr. Mariavittoria Turrini received lecture fees and travel grants from Novartis, Biogen-Idec.
Dr. Cristina Scarpazza: nothing to disclose
Dr. Marco Rovaris received travel e research grants from Biogen, Merck Serono, Novartis and TEVA
Dr. Alessia D´Arma: nothing to disclose
Dr. Guido Angelo Cavaletti: nothing to disclose
Dr. Maura Frigo: nothing to disclose
Dr. Valentina Liliana Adriana Torri Clerici acted as an Advisory Board member of Novartis, Genzyme and Merck-Serono, received funding for traveling and honoraria for speaking or writing from Teva, Biogen, Genzyme, Merk-Serono and Almirall. She received support for research project by Almirall.
Dr. Ruggero Capra received consulting fees from Novartis, Biogen-Idec and lecture fees and/or travel grants from Novartis, Biogen-Idec, Genzyme and Sanofi-Aventis.

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