Contributions
Abstract: EP1553
Type: ePoster
Abstract Category: Therapy - disease modifying - Others
Background: A diagnosis of multiple sclerosis (MS) is life-altering. Since the course of MS is heterogeneous, with no validated prognostic biomarkers, patients face uncertainty in terms of long-term physical and cognitive challenges, loss of employment and social isolation. Patients often turn to the Internet and social media for information about MS and its management, and to seek out fellow patients and support groups.
Objective: To examine the use of social media and the Internet among patients with MS to better characterize disease education, management and support.
Methods: MEDLINE was searched without date restriction to identify studies of Internet and social media use by patients with MS; this was complemented by a Google search using similar terms. One of the authors (JB) provided a patient"s perspective on these themes.
Results: We identified 11 studies that surveyed aspects of Internet or social media use among patients with MS. About 90% of patients with MS are regular users of the Internet, a higher proportion than in the general population (~70-80%). Approximately 80% of patients find the Internet and social media to be useful sources of information about MS, with 50-80% of patients using these platforms to prepare for consultations with a healthcare professional (HCP) or to understand or supplement information exchanged in these consultations. More than half of patients sought general information about MS, or specific information on MS coping strategies, treatment or symptoms; 33-50% sought information about complementary therapies, causes of MS or disease prognosis. Where to obtain medical care and how to pay for it were other search themes identified. HCPs were the most trusted source of information, but when asked where information was first sought, patients generally nominated websites, before their HCP. More than half of patients with MS use social media; over one-third use it to maintain contact with other patients and a similar proportion to solicit others" opinions on specific MS topics. JB noted that “the Internet empowered me as a patient to become informed about my condition, to consider my options and the opinions of others, and to take charge of managing my disease in the best possible way for me.”
Conclusions: Patients with MS commonly use the Internet and social media to learn about MS and its treatment, allowing them to participate actively in the management of their disease.
Disclosure: Jeri Burtchell has acted as a consultant for Novartis, Lilly, Janssen, Vanderbilt University, Rutger´s University, and Louisiana Public Health Institute and has received fees for speaking from Novartis, Janssen, Lilly, and ERT. As an employee of HealthiVibe, LLC, she has worked on projects with many pharmaceutical companies including Novartis. She also serves on the patient advisory boards of CureClick and MS SoftServe, Inc.
Daniel Kantor has received honoraria from Novartis.
Abstract: EP1553
Type: ePoster
Abstract Category: Therapy - disease modifying - Others
Background: A diagnosis of multiple sclerosis (MS) is life-altering. Since the course of MS is heterogeneous, with no validated prognostic biomarkers, patients face uncertainty in terms of long-term physical and cognitive challenges, loss of employment and social isolation. Patients often turn to the Internet and social media for information about MS and its management, and to seek out fellow patients and support groups.
Objective: To examine the use of social media and the Internet among patients with MS to better characterize disease education, management and support.
Methods: MEDLINE was searched without date restriction to identify studies of Internet and social media use by patients with MS; this was complemented by a Google search using similar terms. One of the authors (JB) provided a patient"s perspective on these themes.
Results: We identified 11 studies that surveyed aspects of Internet or social media use among patients with MS. About 90% of patients with MS are regular users of the Internet, a higher proportion than in the general population (~70-80%). Approximately 80% of patients find the Internet and social media to be useful sources of information about MS, with 50-80% of patients using these platforms to prepare for consultations with a healthcare professional (HCP) or to understand or supplement information exchanged in these consultations. More than half of patients sought general information about MS, or specific information on MS coping strategies, treatment or symptoms; 33-50% sought information about complementary therapies, causes of MS or disease prognosis. Where to obtain medical care and how to pay for it were other search themes identified. HCPs were the most trusted source of information, but when asked where information was first sought, patients generally nominated websites, before their HCP. More than half of patients with MS use social media; over one-third use it to maintain contact with other patients and a similar proportion to solicit others" opinions on specific MS topics. JB noted that “the Internet empowered me as a patient to become informed about my condition, to consider my options and the opinions of others, and to take charge of managing my disease in the best possible way for me.”
Conclusions: Patients with MS commonly use the Internet and social media to learn about MS and its treatment, allowing them to participate actively in the management of their disease.
Disclosure: Jeri Burtchell has acted as a consultant for Novartis, Lilly, Janssen, Vanderbilt University, Rutger´s University, and Louisiana Public Health Institute and has received fees for speaking from Novartis, Janssen, Lilly, and ERT. As an employee of HealthiVibe, LLC, she has worked on projects with many pharmaceutical companies including Novartis. She also serves on the patient advisory boards of CureClick and MS SoftServe, Inc.
Daniel Kantor has received honoraria from Novartis.