ATLANTA, April 30, 2014 /PRNewswire/ -- Today, the
U.S. Department of Veterans Affairs' Epilepsy Centers of Excellence
(ECoE), biopharmaceutical company UCB, and health data sharing
network PatientsLikeMe® presented the results of the
Policy for Optimal Epilepsy Management (POEM) study at the
66th Annual Meeting of the American Academy of Neurology
in Philadelphia, Pa.
This first-time, real-world study of an online health management
platform demonstrated statistically significant improvements in
established epilepsy metrics of patient self-management and
self-efficacy in U.S. veterans who participated in the study, which
used PatientsLikeMe.
"The results of the POEM study reinforce the potential for an
online data sharing network like PatientsLikeMe to positively
influence self-management and self-efficacy for veterans with
epilepsy. We're pleased to share these results with the scientific
community at AAN and look forward to using what we've learned as a
foundation for further research into how we can use digital health
solutions to improve the care for the broader epilepsy community,"
said principal investigator and ECoE's John
Hixson, M.D., Assistant Professor of Clinical Neurology and
Deputy Associate Chief of Staff for Clinical Informatics at the San
Francisco VA Medical Center.
In January 2013, the POEM study
was launched online for veterans living with epilepsy who had not
previously used the PatientsLikeMe website. A total of 249 veterans
completed an online informed consent and a baseline assessment of
two validated scales that measure epilepsy self-management
practices, the Epilepsy Self-Management Scale (ESMS) and the
Epilepsy Self-Efficacy Scale (ESES). After completing the initial
survey, patients were invited to register as PatientsLikeMe members
and engage on the site, which offers multiple ways for patients to
connect with other patients, condition-specific tracking tools and
educational resources. Six weeks later, 92 participants (36.9%)
completed the assessment of ESES and ESMS measures again. These
veterans reported improvement in epilepsy self-management and
self-efficacy, demonstrated by increases in both the ESMS (140 to
143 points; p= 0.02) and ESES (244 to 254 points; p=0.02) total
scores over six weeks. The greatest change was observed on the ESMS
information management subscale (20 to 22 points; p<0.001).
"UCB is committed to working with leading health care and
technology experts like the VA ECoE and PatientsLikeMe to improve
the standard of care for people living with epilepsy. The VA
provides a unique environment to explore the use of an online
health platform to support epilepsy self-management practices,"
said Patty Fritz, Vice President of
Corporate Affairs for UCB. "We believe that this study follows
recommendations from the Institute of Medicine Report on epilepsy
to strengthen stakeholder collaboration and increase the power of
patient-focused data in the pursuit of better outcomes for people
living with epilepsy."
UCB's first research utilizing patient communities was in 2010,
when it partnered with PatientsLikeMe to conduct a study of the
patient-reported benefits of participating in the PatientsLikeMe
epilepsy community.1 This survey revealed that people
with epilepsy who joined PatientsLikeMe reported that they better
understood their own seizures, enhanced management of side effects
and improved adherence to their medications.2,3
"The POEM study was unique in that we were able to design,
recruit, engage and close the study all within one year," said
Paul Wicks, PhD, Vice President of
Innovation at PatientsLikeMe. "It was gratifying to see veterans
with epilepsy coming together online to discuss the challenges of
living with seizures. It is this kind of interaction with other
patients that is a key ingredient to improving engagement and
self-management of chronic conditions."
About Epilepsy 4,5,6
Epilepsy is a chronic neurological disorder affecting
approximately 65 million people worldwide and more than 2 million
people in the U.S. It is the fourth most common neurological
disorder in the U.S. after migraine, stroke and Alzheimer's
disease. Anyone can develop epilepsy; it occurs across all ages,
races and genders and is defined as two or more unprovoked
seizures.
References
- Wicks, P., Hixson, J., The Patient Engagement Pill: Lessons
from Epilepsy, Health Affairs Blog, 7th
February 2013,
http://healthaffairs.org/blog/2013/02/07/the-patient-engagement-pill-lessons-from-epilepsy/,
Copyright ©2013 Health Affairs by Project HOPE – The
People-to-People Health Foundation, Inc.
- Wicks, P., Keininger, D. L., Massagli, M. P., de la Loge, C.,
Brownstein, C., Isojarvi, J., & Heywood, J. (2011). Perceived
benefits of sharing health data between people with epilepsy on an
online platform. Epilepsy & Behavior.
- De la Loge, C., Massagli, M., Wicks, P. PatientsLikeMe®, a
data-sharing online community: benefits for patients with epilepsy.
Presented at the 63rd Annual Meeting of the American Academy of
Neurology (April 9-16 2011),
Honolulu, USA.
- The Epilepsy Foundation of America. Epilepsy 101. Available
from: http://www.epilepsy.com/learn/about-epilepsy-basics.
(Accessed 24th March 2014)
- National Institute of Neurological Disorders and Stroke (NINDS)
/ National Institutes of Health (NIH). Seizures and Epilepsy.
Available from:
http://www.ninds.nih.gov/disorders/epilepsy/detail_epilepsy.htm#196923109.
(Accessed 24th March 2014)
- The Epilepsy Foundation of America. Epilepsy Statistics.
Available from: http://www.epilepsy.com/learn/epilepsy-statistics
(Accessed 24th March 2014)
About ECoE
The VA has funded the Epilepsy Centers of Excellence
(http://www.epilepsy.va.gov/). The Centers of Excellence are
charged with: (1) establishing a national system of care to all
veterans with epilepsy, (2) educating veterans and others in their
lives impacted by epilepsy about high quality epilepsy care, (3)
providing health professional education and training in order to
deliver the highest quality of standard of care to veterans with
epilepsy, (4) utilizing national VA and other databases in order to
inform providers and policy makers in Central Office about health
care delivery and health policy decisions, (5) conducting
state-of-the-art research about epilepsy, and (6) implementing an
informatics backbone to meet the above objectives.
About UCB
UCB, Brussels,
Belgium (www.ucb.com) is a global biopharmaceutical company
focused on the discovery and development of innovative medicines
and solutions to transform the lives of people living with severe
diseases of the immune system or of the central nervous system.
With more than 8500 people in approximately 40 countries, the
company generated revenue of € 3.4 billion in 2013. UCB is listed
on Euronext Brussels (symbol: UCB). Follow us on Twitter:
@UCB_news
About UCB Research Collaborations
UCB has adopted an
open innovation model in which internal and external experts
collaborate to address unmet needs for people living with severe
diseases of the immune system and the central nervous system. As
part of its commitment to raising the standard of care for
patients, UCB is building these long-term collaborations and super
networks with leading researchers and institutions to use
cutting-edge scientific research and technology to deliver unique
patient solutions.
About PatientsLikeMe
PatientsLikeMe®
(www.patientslikeme.com) is a patient network that improves lives
and a real-time research platform that advances medicine. Through
the network, patients connect with others who have the same disease
or condition and track and share their own experiences. In the
process, they generate data about the real-world nature of disease
that help researchers, pharmaceutical companies, regulators,
providers, and nonprofits develop more effective products, services
and care. With more than 250,000 members, PatientsLikeMe is a
trusted source for real-world disease information and a clinically
robust resource that has published more than 40 peer-reviewed
research studies. Visit us at www.patientslikeme.com or follow us
via our blog, Twitter or Facebook.
SOURCE UCB
