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Abstract Details

Comparing HCP and Patient Perceptions of Conversations about Disease Progression in MS
Multiple Sclerosis
P15 - Poster Session 15 (12:00 PM-1:00 PM)
9-013
To examine factors that influence initiation of conversations about disease progression between HCPs and PwMS. To additionally examine PwMS responses to the topic.
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 communication around disease progression between healthcare professionals (HCPs) and people with MS (PwMS).
A 6 question electronic survey was developed to gain insights into HCPs’ and PwMS’ perceptions of disease progression conversations. Surveys were conducted at international congresses and online.
105 HCPs and 113 PwMS took the survey. 97.1% of HCPs state they discuss progression with patients, however 32.7% of PwMS reported their HCP had never discussed the topic with them. The most common reason for initiating conversations was the importance of being open about MS (41.9% HCPs, 41.6% PwMS); HCPs also felt discussing progression helps improve treatment adherence (37.1%), however only 17.7% of PwMS agreed. When asked why progression discussions might not occur, the most reported reason was a lack of time in appointments (41.8% HCPs, 41.1% PwMS). HCPs also stated PwMS don’t want to think about progression (40.0%), while 30.3% of PwMS stated they did not feel empowered, or were waiting for HCPs, to raise the topic. PwMS categorised their emotional response to initial progression discussions as ‘worried’ (44.3% PwMS) and ‘overwhelmed’ (38.0%). One of the biggest concerns for PwMS was how progression would impact their families, relationships, and friends (54%).
Survey responses highlighted discrepancies between HCPs and PwMS. A third of PwMS reported a lack of discussion with HCPs around disease progression. PwMS attributed this to a lack of empowerment and feeling overwhelmed, rather than avoiding the topic. These differences emphasize the need for more effective communication between HCP’s and PwMS.
Authors/Disclosures
Mitzi J. Williams, MD, FÂ鶹´«Ã½Ó³»­ (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 Â鶹´«Ã½Ó³»­ interests or activities. Dr. Williams has a non-compensated relationship as a Board Trustee with Consortium of MS Centers that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. Williams has a non-compensated relationship as a Board Chair with Joi Life Foundation that is relevant to Â鶹´«Ã½Ó³»­ interests or activities.
Elisabeth G. Celius, MD Dr. Celius 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. Celius 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. Celius has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Merck. Dr. Celius 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. Celius has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Novartis. Dr. Celius has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Sanofi. Dr. Celius has received personal compensation in the range of $5,000-$9,999 for serving on a Speakers Bureau for Merck. Dr. Celius has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Biogen. Dr. Celius has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Novartis. Dr. Celius has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Roche.
Sven Schippling (University of Neurology) No disclosure on file
No disclosure on file
Nektaria Alexandri Nektaria Alexandri has received personal compensation for serving as an employee of Merck Healthcare KGaA.