Contributions
Abstract: EP1552
Type: ePoster
Abstract Category: Therapy - disease modifying - Others
Background: The multiple sclerosis (MS) treatment landscape is expanding rapidly, and patients are increasingly faced with navigating complex decisions regarding their use of disease-modifying treatments (DMTs).
Objective: To describe early data from an online observational research platform focused on important aspects of MS treatment with DMTs.
Methods: Clinicians, researchers, software designers and communication specialists collaborated on a real-world treatment observation platform on PatientsLikeMe, an online health community. Modules were developed to collect data on various aspects of MS disease and treatment, including DMT awareness and utilization. The DMT awareness module was piloted in October 2015. Data was collected at baseline and quarterly thereafter, with an aim of collecting data from 600 patients per quarter.
Results: A total of 956 patients in the US (15% of those invited) completed the pilot module; most respondents were female (81%), white (89%) and educated (84%, college diploma or higher). Of the respondents reporting relapsing-remitting MS (RRMS, n=778), 77% were currently taking a DMT vs 46% and 41% of secondary progressive MS (SPMS, n=117) and primary progressive MS (PPMS, n=61) respondents, respectively. The most frequently used DMTs in RRMS patients were dimethyl fumarate (Tecfidera®, 27%) and glatiramer acetate (Copaxone®, 25%). A higher proportion of PPMS patients (18%) had never taken a DMT before vs SPMS (11%) and RRMS patients (7%). Among RRMS patients, awareness of current DMTs was highest (≥80%) for natalizumab (Tysabri®) and the self-injectable DMTs or ABCREs, including interferons (Avonex®, Betaseron®/Betaferon®/Extavia®, Rebif®) and glatiramer acetate. The level of DMT awareness was correlated with time since US approval (Spearman"s ρ=0.64, p< 0.05), with awareness of recently introduced oral therapies increasing over time. Patients" expectations for DMTs were high, with 35% of patients on ABCRE treatments expecting that these DMTs will stop disease progression and improve symptoms. Additional data will be reported from other modules executed in 2016.
Conclusion: As new therapies for MS enter the treatment milieu, leveraging patient communities and evolving data collection technologies to obtain real-world data on DMT awareness and utilization may provide unique insights into patients" perspectives on MS treatments and expectations on clinical decision-making and treatment impact.
Funded by Genentech, Inc.
Disclosure: Paul Wicks is an employee of PatientsLikeMe and holds stock options in the company. Paul Wicks is an associate editor at the Journal of Medical Internet Research and is on the Editorial Advisory Boards of The BMJ and BMC Medicine. Paul Wicks has received speaker fees from Bayer and honoraria from Roche, ARISLA, and the BMJ.
The PatientsLikeMe Research Team has received research funding (including conference support and consulting fees) from Abbvie, Accorda, Actelion, Alexion, Amgen, AstraZeneca, Avanir, Biogen, Boehringer Ingelheim, Celgene, EMD, Genentech, Genzyme, Janssen, Johnson & Johnson, Merck, Neuraltus, Novartis, Otsuka, Sanofi, Takeda, and UCB. The PatientsLikeMe R&D team has received research grant funding from Kaiser Permanente, the Robert Wood Johnson Foundation, Sage Bionetworks, The AKU Society, and the University of Maryland.
Pronabesh Dasmahapatra is an employee of PatientsLikeMe and holds stock options in the company.
Victor Wang is an employee of PatientsLikeMe and holds stock options in the company.
Nina Parikh Thomas is an employee of Genentech, Inc.
Laura Julian is an employee of Genentech, Inc.
Abstract: EP1552
Type: ePoster
Abstract Category: Therapy - disease modifying - Others
Background: The multiple sclerosis (MS) treatment landscape is expanding rapidly, and patients are increasingly faced with navigating complex decisions regarding their use of disease-modifying treatments (DMTs).
Objective: To describe early data from an online observational research platform focused on important aspects of MS treatment with DMTs.
Methods: Clinicians, researchers, software designers and communication specialists collaborated on a real-world treatment observation platform on PatientsLikeMe, an online health community. Modules were developed to collect data on various aspects of MS disease and treatment, including DMT awareness and utilization. The DMT awareness module was piloted in October 2015. Data was collected at baseline and quarterly thereafter, with an aim of collecting data from 600 patients per quarter.
Results: A total of 956 patients in the US (15% of those invited) completed the pilot module; most respondents were female (81%), white (89%) and educated (84%, college diploma or higher). Of the respondents reporting relapsing-remitting MS (RRMS, n=778), 77% were currently taking a DMT vs 46% and 41% of secondary progressive MS (SPMS, n=117) and primary progressive MS (PPMS, n=61) respondents, respectively. The most frequently used DMTs in RRMS patients were dimethyl fumarate (Tecfidera®, 27%) and glatiramer acetate (Copaxone®, 25%). A higher proportion of PPMS patients (18%) had never taken a DMT before vs SPMS (11%) and RRMS patients (7%). Among RRMS patients, awareness of current DMTs was highest (≥80%) for natalizumab (Tysabri®) and the self-injectable DMTs or ABCREs, including interferons (Avonex®, Betaseron®/Betaferon®/Extavia®, Rebif®) and glatiramer acetate. The level of DMT awareness was correlated with time since US approval (Spearman"s ρ=0.64, p< 0.05), with awareness of recently introduced oral therapies increasing over time. Patients" expectations for DMTs were high, with 35% of patients on ABCRE treatments expecting that these DMTs will stop disease progression and improve symptoms. Additional data will be reported from other modules executed in 2016.
Conclusion: As new therapies for MS enter the treatment milieu, leveraging patient communities and evolving data collection technologies to obtain real-world data on DMT awareness and utilization may provide unique insights into patients" perspectives on MS treatments and expectations on clinical decision-making and treatment impact.
Funded by Genentech, Inc.
Disclosure: Paul Wicks is an employee of PatientsLikeMe and holds stock options in the company. Paul Wicks is an associate editor at the Journal of Medical Internet Research and is on the Editorial Advisory Boards of The BMJ and BMC Medicine. Paul Wicks has received speaker fees from Bayer and honoraria from Roche, ARISLA, and the BMJ.
The PatientsLikeMe Research Team has received research funding (including conference support and consulting fees) from Abbvie, Accorda, Actelion, Alexion, Amgen, AstraZeneca, Avanir, Biogen, Boehringer Ingelheim, Celgene, EMD, Genentech, Genzyme, Janssen, Johnson & Johnson, Merck, Neuraltus, Novartis, Otsuka, Sanofi, Takeda, and UCB. The PatientsLikeMe R&D team has received research grant funding from Kaiser Permanente, the Robert Wood Johnson Foundation, Sage Bionetworks, The AKU Society, and the University of Maryland.
Pronabesh Dasmahapatra is an employee of PatientsLikeMe and holds stock options in the company.
Victor Wang is an employee of PatientsLikeMe and holds stock options in the company.
Nina Parikh Thomas is an employee of Genentech, Inc.
Laura Julian is an employee of Genentech, Inc.