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Abstract Details

Comparing Patient Perceptions on Multiple Sclerosis Management and Care – A Sub-analysis of Geographic Differences
Practice, Policy, and Ethics
P4 - Poster Session 4 (5:30 PM-6:30 PM)
4-076
To compare the perceptions of PwMS on MS management and care across two geographical regions: Europe, and North America (US and Canada). Particular emphasis was on patient support at diagnosis, treatment decisions, and communication.
The MS in the 21st Century initiative is led by a Steering Group of international multiple sclerosis (MS) specialists and patient advocates with a current focus of improving education and communication between healthcare professionals and people with MS (PwMS).
An electronic survey was developed to gain insight into patients’ opinions on unmet needs in MS management. The surveys were conducted at two international patient meetings in 2017 and 2018. Multiple answers were solicited in response to 10 questions.
A total of 55 PwMS from Europe and 46 from North America completed the survey. PwMS in Europe listed a lack of time in medical appointments as their biggest challenge at diagnosis (60.0%) whereas, PwMS in North America reported understanding disease progression to be their biggest challenge (57.8%). European PwMS reported greater levels of additional patient support available in their clinics (i.e. MS nurse (67.3%), information about employment (21.2%), or psychological support (25.0%)) whereas, 26.1% of North American PwMS reported no additional support. PwMS in Europe reported being less involved in treatment decisions with 20.5% saying they were not involved, compared with 2.4% in North America. European PwMS placed more importance on the safety of their treatment (57.7%) whereas PwMS in North America placed more importance on the efficacy of their treatment (71.7%).
There were distinct geographical variations between PwMS perceptions and priorities relating to MS care, education, and treatment decisions. European PwMS reported less time in appointments and lower involvement in treatment decisions than North American PwMS however, they also reported greater levels of support and education outside of their neurologist appointments.
Authors/Disclosures
Mitzi J. Williams, MD, FAAN (Joi Life Wellness Group)
PRESENTER 		Dr. Williams has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Biogen Idec. Dr. Williams has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Novartis Pharmaceuticals. Dr. Williams has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for EMD Serono. Dr. Williams has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Genentech. Dr. Williams has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Sanofi Genzyme. Dr. Williams has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for TG Therapeutics. Dr. Williams has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Alexion. Dr. Williams has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Bristol Myers Squibb. Dr. Williams has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Amgen. Dr. Williams has received personal compensation in the range of $10,000-$49,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Genentech. Dr. Williams has received personal compensation in the range of $10,000-$49,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Novartis. Dr. Williams has received personal compensation in the range of $10,000-$49,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Biogen. Dr. Williams has received personal compensation in the range of $10,000-$49,999 for serving on a Scientific Advisory or Data Safety Monitoring board for EMD Serono. Dr. Williams has received personal compensation in the range of $10,000-$49,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Genzyme. Dr. Williams has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for TG Therapeutics. Dr. Williams has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Alexion. Dr. Williams has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Bristol Myers Squibb. Dr. Williams has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Amgen. Dr. Williams has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for EMD Serono. Dr. Williams has received personal compensation in the range of $5,000-$9,999 for serving on a Speakers Bureau for Genentech. Dr. Williams has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for Sanofi. Dr. Williams has received personal compensation in the range of $5,000-$9,999 for serving on a Speakers Bureau for Amgen. Dr. Williams has received publishing royalties from a publication relating to health care. Dr. Williams has received publishing royalties from a publication relating to health care. Dr. Williams has a non-compensated relationship as a National Board Member with National MS Society that is relevant to AAN interests or activities. Dr. Williams has a non-compensated relationship as a Board Trustee with Consortium of MS Centers that is relevant to AAN interests or activities. Dr. Williams has a non-compensated relationship as a Board Chair with Joi Life Foundation that is relevant to AAN interests or activities.
Dawn W. Langdon, PhD (Royal Holloway) Prof. Langdon has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Merck. Prof. Langdon has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Novartis. The institution of Prof. Langdon has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Celgene. Prof. Langdon has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Celgene. Prof. Langdon has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Merck. Prof. Langdon has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Bayer. The institution of Prof. Langdon has received research support from Merck. The institution of Prof. Langdon has received research support from Novartis. The institution of Prof. Langdon has received research support from MS Society (UK). The institution of Prof. Langdon has received research support from Multiple Sclerosis Trust (UK).
Gavin Giovannoni, MD (QMUL) Dr. Giovannoni has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Biogen. Dr. Giovannoni has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Sanofi. Dr. Giovannoni has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Merck KGaA. Dr. Giovannoni has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Roche-Genentech. Dr. Giovannoni has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Moderna. Dr. Giovannoni has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Sandoz. Dr. Giovannoni has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Astoria Biologica. Dr. Giovannoni has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Zenas. Dr. Giovannoni has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Biogen. Dr. Giovannoni has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Roche. Dr. Giovannoni has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Sanofi. Dr. Giovannoni has received personal compensation in the range of $5,000-$9,999 for serving on a Speakers Bureau for Medscape.
No disclosure on file
Nektaria Alexandri Nektaria Alexandri has received personal compensation for serving as an employee of Merck Healthcare KGaA.