Multiple sclerosis clinical trials: how to encourage patients participation? Results from an observational study conducted via Carenity, a worldwide online patient community
Author(s): ,
R. Dos Santos
Affiliations:
ELSE CARE SAS - Carenity, Paris, France
,
L. Radoszycki
Affiliations:
ELSE CARE SAS - Carenity, Paris, France
M. Chekroun
Affiliations:
ELSE CARE SAS - Carenity, Paris, France
ECTRIMS Online Library. Dos Santos R. 10/10/18; 229288; EP1450
Roman Dos Santos
Roman Dos Santos
Contributions
Abstract

Abstract: EP1450

Type: Poster Sessions

Abstract Category: Pathology and pathogenesis of MS - Pathology

In a worldwide context of competitive multiple sclerosis clinical research, patient engagement is key to optimize medical research and increase participation rates.
An online questionnaire has been submitted from August 2017 to October 2017 to Carenity's French members affected with multiple sclerosis. The aim of this study was to identify patients' motivations and hindrances to join a trial in order to increase participation rates by implementing tailored services and information.
152 patients affected with multiple sclerosis participated in the study (mean age = 49 y/o, 74% of women). 18% already participated in a clinical trial. Reimbursing the expenses related to the clinical trial can improve non-participant motivation (median weight on participants' motivation to join their trial = 10/10), leveraging the trial's healthcare center notoriety (7.0/10) or the trial's doctor notoriety (7.0/10) would entice them to enter a trial. Communication should also aim at reassuring patients about side effects (median weight on participants' reluctance to join their trial = 8.0/10), potential risks for their health (8.0/10) or a change in their doctor / place of care (6.0/10).
Implementing tailored services and clarifying information would be an efficient way to reassure patients and increase their willingness to participate. Non-participants would be enticed to participate if they had access to participant testimonials (75%), to a 24/7 medical helpline (71%) or to transportation services (69%). Spreading and clarifying information before the trial is also critical: 17% of participants did not understand clearly if they will have out-of-pocket costs. Meanwhile, it is a heavily weighted point in the patient's decision to participate. Informing patients via convenient channels is also key: 81% of participants and non-participants think that an online patient community is a relevant medium to convey information about clinical trials.
This observational study allowed to identify concrete levers to reassure patients affected with multiple sclerosis about the benefits/constraints balance and to clarify information at each stage of the trial (before, during, after), which is essential to accelerate clinical trial recruitment.
Disclosure: Name: nothing to disclose

Abstract: EP1450

Type: Poster Sessions

Abstract Category: Pathology and pathogenesis of MS - Pathology

In a worldwide context of competitive multiple sclerosis clinical research, patient engagement is key to optimize medical research and increase participation rates.
An online questionnaire has been submitted from August 2017 to October 2017 to Carenity's French members affected with multiple sclerosis. The aim of this study was to identify patients' motivations and hindrances to join a trial in order to increase participation rates by implementing tailored services and information.
152 patients affected with multiple sclerosis participated in the study (mean age = 49 y/o, 74% of women). 18% already participated in a clinical trial. Reimbursing the expenses related to the clinical trial can improve non-participant motivation (median weight on participants' motivation to join their trial = 10/10), leveraging the trial's healthcare center notoriety (7.0/10) or the trial's doctor notoriety (7.0/10) would entice them to enter a trial. Communication should also aim at reassuring patients about side effects (median weight on participants' reluctance to join their trial = 8.0/10), potential risks for their health (8.0/10) or a change in their doctor / place of care (6.0/10).
Implementing tailored services and clarifying information would be an efficient way to reassure patients and increase their willingness to participate. Non-participants would be enticed to participate if they had access to participant testimonials (75%), to a 24/7 medical helpline (71%) or to transportation services (69%). Spreading and clarifying information before the trial is also critical: 17% of participants did not understand clearly if they will have out-of-pocket costs. Meanwhile, it is a heavily weighted point in the patient's decision to participate. Informing patients via convenient channels is also key: 81% of participants and non-participants think that an online patient community is a relevant medium to convey information about clinical trials.
This observational study allowed to identify concrete levers to reassure patients affected with multiple sclerosis about the benefits/constraints balance and to clarify information at each stage of the trial (before, during, after), which is essential to accelerate clinical trial recruitment.
Disclosure: Name: nothing to disclose

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