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On the heels of the nation’s largest event dedicated to the epilepsy community, the National Frequent a leave for the sake Epilepsy, advocates have announced their recommendations in reply to a new national survey uncovering key challenges facing the epilepsy community. Challenges include gaps in stoical-physician communication around medication-joint side effects and low following awareness of epilepsy.

According to the inspection, sponsored by ORTHO-McNEIL NEUROLOGICS®, Division of Ortho-McNeil-Janssen Pharmaceuticals, Inc, 75 percent of epilepsy patients participation medication-related side effects and for the majority, these impact their daily lives, including 57 percent who opportunity work or dogma are affected. A disconnect exists between patients and healthcare professionals surrounding their discussions on these side effects. While 98 percent of physicians report discussing medication-related side effects with patients, less than half (47 percent) of epilepsy patients report these discussions take place. And, more than one-quarter of patients report they then have a reluctant to bring up this topic during workplace visits. Not surprisingly, healthcare professionals fail to appreciate the count of patients experiencing medication-reciprocal side effects, estimating this figure at just 43 percent. The most joint side effects according to the measure are fatigue, poor retention, tonnage gain or weight loss and loss of concentration.

“These findings indicate treatment expectations all of a add up to epilepsy patients are ingenuously too low. According to the survey, 61 percent of people with epilepsy believe that side effects are just something they be dressed to live with,” said roundtable chair and Epilepsy Foundation CEO and President Eric Hargis. “People with epilepsy should be proactive in discussing their treatment plans, opening up with regard to the side effects they experience and sharing how these side effects are affecting their lives.”

Panelists at the nine-individual roundtable included some of the nation’s premiere epileptologists, patients and caregivers and celebrity advocates, including Greg Grunberg, unrivalled of NBC’s television series “Heroes” and old boy of a son with epilepsy, and Supplemental York Giants defensive back Geoffrey Pope whose grandmother has epilepsy.

Improving Treatment Plans

Roundtable participants agreed that people with epilepsy and healthcare professionals should work together to secure treatment plans are tailored to the individual. According to the survey, 85 percent of patients would prefer to have a more active role in making their treatment decisions.

“It is crucial for patients to speak up and be a duty of developing their treatment copy,” said Georgia Montouris, M.D., director of epilepsy services at the Boston University Grammar of Medicine and Boston Medical Center.

Healthcare professionals surveyed say they would recommend an selection treatment design at least half the time on those patients experiencing medication-common side effects. “We dire to proliferating the cynosure clear on individualizing treatment plans and struggle on optimal weight between seizure hold sway over and minimization of side effects so that we can further the entire well-being of people with epilepsy,” added Dr. Montouris.

Roundtable contributor Caitlin Purcell, 17, explained how her healthcare professional started her on one medication, but when she was silently experiencing seizures he added new medications to her regime to help her further conduct her condition. Physicians often try a selection of therapy mixes to customize the treatment approach, “and Caitlin’s physician was trying to realize the prerogative ‘cocktail’ for her,” noted Dr. Mark Spitz, head of the Adult Comprehensive Epilepsy Program at the University of Colorado.

Participants also discussed the need for new treatments. “We need to continue funding research and development as there is a need for the treatment of drugs that help us better straddle this even out until a preserve for epilepsy can be set up,” said Hargis.

Other recommendations for improving communication and treatment plans included:

* Patients and caregivers should advocate for themselves and discuss their treatment plans, side effects and what other steps can be taken with their healthcare professionals. “As desire as there is seizure vim, there are stock-still things that can be done or treatments that can be tried,” said Grunberg.

* Patients should strive with a view a more individualized treatment plan by sharing a regularly appointment book or diary of how they are feeling, any medication side-effects or breakthrough seizures they experience with their healthcare professional.

* Patients and caregivers, as well as healthcare professionals, should raise their standards and not quieten if the long-suffering is tranquil experiencing seizures or side effects. “It’s not a shoppers-sour. We may not be able to get every unyielding to the point of experiencing no seizures and no side effects, but we should not at any time stop trying,” said Dr. Montouris.

* Finally, panelists encouraged patients to not hesitate to search for a other opinion when patients are not achieving their treatment goals.

Raising Public Awareness of Epilepsy

According to the survey, three-quarters of people with epilepsy and 90 percent of physicians feel that the encyclopedic in the open is not well-informed round epilepsy. Roundtable participants agreed that this is a big cause for the stigma surrounding epilepsy and some shared their stories of how this has impacted their lives.

“The other kids (in school) are every so often afraid of me. And sometimes even if they want to have me over after school, their parents are afraid, especially if they haven’t seen me have a attack,” explained 14-year-time-worn panelist Carly Richards of Chicago.

Participants addressed the need for continued public instruction programs that focus on eliminating smirch associated with epilepsy, such as the March 29th annual National Sneak for Epilepsy. The panelists encouraged all people who have epilepsy or advised of someone with the condition to speak unconscious and dividend their experiences.

“We are at a tipping point as far as something bringing epilepsy insensible in the open,” said Grunberg. “We indigence to continue the meeting we started here today to increase awareness and break down the blemish that is unfairly associated with this disorder.”

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Article adapted by Medical News Today from original cram unchain.
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The roundtable, which took place in Washington, D.C. on Friday, Walk 28, was hosted by the Epilepsy Foundation and ORTHO-McNEIL NEUROLOGICS®, Division of Ortho-McNeil-Janssen Pharmaceuticals, Inc.

Desire visit: http://www.epilepsyfoundation.org/ to find more data down upcoming 2008 initiatives resulting from the roundtable discussion.

About the Survey

Richard Epoch Scrutinization fielded a survey to epilepsy patients and healthcare professionals. Data from both audiences were collected in January 2008. Healthcare authority data included 459 healthcare professionals - comprised of 155 primary care physicians (family, undetailed, or internal medicine) and 304 neurologists. Patient data included 414 people diagnosed with epilepsy, screened for having seen a healthcare professional also in behalf of epilepsy within the matrix two years.

About the Epilepsy Creation

The Epilepsy Foundation, a national nonprofit with affiliated organizations all over the In agreement States, has led the encounter against epilepsy since 1968. The Foundation’s goals are to ensure that people with seizures are able to participate in all life experiences; and prohibit, control and rectify epilepsy through services, education, advocacy and up on, so not another moment is lost to seizures. For additional information, suit visit http://www.epilepsyfoundation.org/.

Take ORTHO-McNEIL NEUROLOGICS

Headquartered in Titusville, N.J., ORTHO-McNEIL NEUROLOGICS focuses exclusively on providing solutions that rehabilitate neurological health. The company currently markets products for Alzheimer’s plague, epilepsy and acute and preventive migraine treatment. ORTHO-McNEIL NEUROLOGICS, in conjunction with internal and external probe partners, continues to explore new opportunities to develop solutions for unmet healthcare needs in neurology.

Source: Kelli Teno
Golin/Harris International