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Monday, April 23, 2012

ALS Patients Differ on Treatment Choices in Later Phases of Disease, Penn Medicine Study Shows

April 23, 2012
 
Two new studies analyzing treatment decisions in late-stage amyotrophic lateral sclerosis (ALS) patients shed light onto treatments aimed to extend the duration and quality of life in this progressively debilitating neuromuscular disorder. Researchers from the Perelman School of Medicine at the University of Pennsylvania found that waiting until the last minute to receive one treatment resulted in not living long enough to experience the benefits. In a separate study, Penn researchers uncovered polarized preferences among patients regarding the value of an expensive, marginally effective disease-modifying drug. The research will be presented at the American Academy of Neurology's 64th Annual Meeting in New Orleans.

ALS, commonly known as Lou Gehrig's disease, is rare, affecting approximately 30,000 Americans. In later stages of the disease, it paralyzes ALS patients' bodies, while minds often stay sharp. Along with other treatments and supportive therapies used in later stages of the disease, many patients receive a feeding tube to ensure nourishment can be obtained when muscles are impaired.

One Penn Medicine study demonstrates that ALS patients who have feeding tubes placed before an emergency situation strikes fare better. Those having surgeries in non-emergent settings were much less likely to die within one month after surgery, compared to ALS patients receiving their feeding tubes under duress. Median survival after the feeding tube surgery was 6 months overall and longer for patients undergoing non-emergent versus emergent placement (7 months vs. 4 months). In addition, mortality rates were worse for patients having procedures done at hospitals that did not regularly perform feeding tubes placement in ALS patients.

"Timing is crucial for placement of feeding tubes in ALS patients," said the lead author of both studies, Amy Tsou, MD, MSc, a fellow in Neurology and a Robert Wood Johnson VA Clinical Scholar. "We've shown that waiting too long can be detrimental and happens too often. In general, it is important for clinicians and patients to proactively prepare and reevaluate treatment decisions as ALS patients enter into different phases of the disease."

In a second study, researchers found polarized treatment preferences regarding Riluzole, the first FDA approved treatment to slow ALS. Patients had sharply polarized preferences about this expensive treatment, which modestly prolongs length of life of ALS patients. In a survey of 98 patients with ALS or Motor Neuron Disease, nearly two-thirds of the patients ranked Riluzole as either the most important (30 percent) or least important (33 percent) treatment option.

Click here to view the full release.

6 comments:

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  4. Thanks be to God for sending me a deliverer who cured my Amyotrophic lateral sclerosis (ALS) i lived with this virus for 3 years without a cure, i lost strength and i became weak i tried all possible means to get cured but they failed,all my hope was lost, i thought i would die soon, i searched for natural remedies and i found a lot of people who where cured by Dr Adam so i contacted him and he gave me hope and prepare his herbal medicine which i took for 8 days as instructed and to my greatest surprise i was cured using his herbal product. am the happy, i cant believe i could be healed again. please contact him via email if you are having ALS diseases his email is ADAM.AKHERE@YAHOO.COM or call him on +2348158665394

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  6. I am Karen Baird, I was diagnosed of ALS (Lou Gherigs Disease) in 2014, the doctor told me there is no permanent cure for the disease, i was given medication to slow down the progress of the disease, at the initial stage it was not so bad till it progressed to the end middle stage were i had difficulties going about my daily functions as i constantly felt weakness in my legs, ankles and feet, i was totally devastated till my daughter’s co-worker told us about a herbal doctor from west Africa who have herbal medicines for all kind of diseases including ALS, when i contact this herbal doctor via his email, he sent me two bottles of ALS herbal medicine through courier service, when i received this herbal medicine, he gave me step by instructions on how to apply it, when i applied it as instructed, i was cured of the disease within 20-24 days of usage. Contact this great herbal doctor via his email at abumereherbalcentre@gmail.com

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