Contributions
Abstract: P577
Type: Poster Sessions
Abstract Category: Therapy - Immunomodulation/Immunosuppression
Background: With an availability of 17 different treatment options, people with multiple sclerosis (PwMS) face complex decisions on immunotherapies. Their right on evidence-based patient information as a decisional base is legally and ethically justified and PwMS prefer an active role in the decision-making process. The objective of this joint project of the German competence network MS (KKNMS) and the MS society (DMSG) is to develop handbooks on all immune-therapeutic treatment options for PwMS.
Methods: The development follows the criteria of evidence-based health information and the first handbook on Tecfidera® serves as a blueprint respective structure, layout, content and graphics. Every handbook consists of an introduction to the drug, information on risk reduction of relapses and progression, MRI, side-effects and monitoring, Information is summarized by a drug fact box and there is an overview on all treatment options. The development goes along in close collaboration with consumer representatives, authors of the corresponding physician handbook, the management boards of the KKNMS and DMSG, the national board of PwMS and the respective pharmaceutical company. Previously developed figures on absolute risk reduction (ARR) were modified and tested with PwMS as well as newly developed figures on relative risk reduction (RRR) and side effects. Two focus groups, one with neurologists and one with PwMS were conducted to explore the handbooks' feasibility. Currently, 4 handbooks are in print (each run 10,000) and will be handed out together with an evaluation sheet to PwMS in June 2018.
Results: Patient (n=29) feedback led to a change in colour of the ARR-figure and figures on RRR and side-effects were revised multiple times. Feedback of the boards was generally positive. Members of the neurologist focus group (n=5) were rather critical, as they expressed, that it was too much and too complex information. On the other hand, participants of the PwMS-focus group (n=3) found it comprehensive and considered it a viable decision making-aid. The ongoing quantitative survey evaluation of the first 4 Germanwide disseminated handbooks will provide data on the acceptability and understandability.
Conclusions: The handbook might support PwMS in making informed decisions in accordance with personal preferences. Further evaluation data will be presented at the conference.
Disclosure: Christoph Heesen received speaker honoraries and grants from Biogen, Genyzme, Merck, Novartis, Roche
Uwe Zettl received speaker honoraries and/ or grants from Almirall, Bayer, Biogen, Merck, Novartis, Roche, Sanofi Genzyme und Teva.
Anne Rahn has nothing to disclose.
Insa Schiffmann has nothing to disclose.
Klarissa Stürner has nothing to disclose.
Abstract: P577
Type: Poster Sessions
Abstract Category: Therapy - Immunomodulation/Immunosuppression
Background: With an availability of 17 different treatment options, people with multiple sclerosis (PwMS) face complex decisions on immunotherapies. Their right on evidence-based patient information as a decisional base is legally and ethically justified and PwMS prefer an active role in the decision-making process. The objective of this joint project of the German competence network MS (KKNMS) and the MS society (DMSG) is to develop handbooks on all immune-therapeutic treatment options for PwMS.
Methods: The development follows the criteria of evidence-based health information and the first handbook on Tecfidera® serves as a blueprint respective structure, layout, content and graphics. Every handbook consists of an introduction to the drug, information on risk reduction of relapses and progression, MRI, side-effects and monitoring, Information is summarized by a drug fact box and there is an overview on all treatment options. The development goes along in close collaboration with consumer representatives, authors of the corresponding physician handbook, the management boards of the KKNMS and DMSG, the national board of PwMS and the respective pharmaceutical company. Previously developed figures on absolute risk reduction (ARR) were modified and tested with PwMS as well as newly developed figures on relative risk reduction (RRR) and side effects. Two focus groups, one with neurologists and one with PwMS were conducted to explore the handbooks' feasibility. Currently, 4 handbooks are in print (each run 10,000) and will be handed out together with an evaluation sheet to PwMS in June 2018.
Results: Patient (n=29) feedback led to a change in colour of the ARR-figure and figures on RRR and side-effects were revised multiple times. Feedback of the boards was generally positive. Members of the neurologist focus group (n=5) were rather critical, as they expressed, that it was too much and too complex information. On the other hand, participants of the PwMS-focus group (n=3) found it comprehensive and considered it a viable decision making-aid. The ongoing quantitative survey evaluation of the first 4 Germanwide disseminated handbooks will provide data on the acceptability and understandability.
Conclusions: The handbook might support PwMS in making informed decisions in accordance with personal preferences. Further evaluation data will be presented at the conference.
Disclosure: Christoph Heesen received speaker honoraries and grants from Biogen, Genyzme, Merck, Novartis, Roche
Uwe Zettl received speaker honoraries and/ or grants from Almirall, Bayer, Biogen, Merck, Novartis, Roche, Sanofi Genzyme und Teva.
Anne Rahn has nothing to disclose.
Insa Schiffmann has nothing to disclose.
Klarissa Stürner has nothing to disclose.