Ask the Doc: Q & A with Edward Kasarskis, MD, PhD - New AAN guidelines

Ask the Doc: Q & A with Edward Kasarskis, MD, PhD 

Edward Kasarskis, MD, PhD is Director of the University of Kentucky ALS Multidisciplinary Clinic at Cardinal Hill Rehabilitation Hospital in Lexington, Kentucky, professor in the Department of Neurology at the University of Kentucky, and Chief of Neurology at the VA Medical Center in Lexington KY. 

Q: I heard that the American Academy of Neurology (AAN) has just come out with new guidelines for the care of people with ALS. Will those guidelines change the care I'm getting now or what my doctor is doing for me?

Dr. Kasarskis:  You’re right; the AAN recently released new practice guidelines for the care of ALS. (I served on the review team led by Dr. Robert Miller from San Francisco).  They were developed by a team of experts in ALS and review all the available studies published internationally on key aspects of clinical care for ALS patients. Following the established AAN criteria, each study was rated according to the quality of the research. Only the highest quality studies from around the world were included to formulate the practice guidelines. Areas investigated included drugs to slow disease progression, nutrition, respiratory management, multidisciplinary clinics, symptomatic treatment, and others.

Practice guidelines are really “one stop shopping” for the best available evidence that particular approaches are effective treatments. The information should help people with ALS have confidence to move forward with treatments and approaches recommended by their physicians using these guidelines. Here are the highlights:

ALS multidisciplinary clinics, such as The ALS Association Certified Centers, optimize health care delivery and prolong survival, and may also enhance people’s quality of life.

People who are beginning to experience difficulty eating should be encouraged to consider getting a feeding tube, formally called “percutaneous endoscopic gastrostomy” (PEG), to help them maintain their weight and ensure they get the nutrition they need.

Bi-level Non-Invasive Positive Pressure Ventilation (NIPPV), a breathing apparatus that helps people get more air into their lungs, should be encouraged to treat problems of ineffective breathing (called respiratory insufficiency) due to weakness caused by ALS. NIPPV has been shown to lengthen survival and slow the rate of decline in lung function.

Each time you’re asked to make a decision about the care or treatments you’ll receive, it’s helpful to know that these questions have been thoroughly studied and there is solid evidence that they are beneficial.

You can access the guidelines here. Look for “Slide Presentation – Update, The care of the patient with amyotrophic lateral sclerosis,” October, 2009.