If this is not your name, click here.
| | If this is not your name, click here. | | |
| | Contact Us | Order Now | Journals | Bookstore | Register a colleague | | |
| |  DG DISPATCH - AAN: Management of ALS not up to AAN guidelines By Richard Robinson Special to DG News
SAN DIEGO, CA -- May 5, 2000 -- Management of amyotrophic lateral sclerosis (ALS) lags behind established best management practices, according to a study presented at the 52nd Annual Meeting of the American Academy of Neurology held here May 4, 2000. In 1999, the American Academy of Neurology (AAN) released a set of practice guidelines on the management of ALS, said Walter Bradley, MD, of the University of Miami, in Miami, FL. The AAN guidelines cover five areas of patient care, including patient and caregiver education, symptomatic treatment of sialorrhea and emotional lability, guidelines for the use of gastrostomy feeding, emphasis on planning for non-invasive ventilation, and palliative care and advance directives at the end of life. To assess discrepancies between these guidelines and the current standard of ALS care, Dr. Bradley and colleagues examined care practices as recorded in a nationwide database of medical care for more than 2000 ALS patients. "We found that a large proportion of patients [are] not receiving appropriate treatment," Dr. Bradley said. He also noted that this database was primarily drawn from specialized ALS care centers, and that it may reflect a generally better level of care than that experienced by the ALS population at large. Dr. Bradley reported the good news first, saying, "More than 80 percent of patients feel they have received adequate information about ALS." However, he noted, most patients cited advocacy organizations, rather than physicians, as their primary source of information. "This is discouraging," he said. Four percent of ALS patients have sialorrhea, and 70 percent of these are receiving treatment, "so we still have room for improvement," Dr. Bradley said. He went on to note that fewer than one third of patients with pseudobulbar emotionality were receiving antidepressants for this symptom. "Given that pseudobulbar affect can cause social embarrassment, more patients should be offered treatment," said Dr. Bradley. While 90 percent of ALS patients die peacefully, according to the study, Dr. Bradley noted that oxygen, anxiolytics, and analgesics could improve this figure. Advance directives (patient instructions regarding aggressive emergency interventions) are in place for about 90 percent of ALS patients. "This is a good result, our goal should be to raise it to 100 percent for patients with ALS," he stated. Treatment intervention levels for nutrition and ventilation were more troubling. Treatment guidelines call for consideration of a gastrostomy tube before forced ventilation capacity (FVC) falls below 50 percent of normal, to prevent aspiration. Noting that 12 percent of patients below this capacity are not using gastrostomy feeding, he said “there needs to be more widespread education about this intervention.” Most significantly, non-invasive ventilation is dramatically underutilized in ALS patients. The guidelines call for consideration of assisted ventilation at FVC below 40 percent of normal; However, only about one in eight patients meeting this criterion actually receive assisted ventilation. "It's clear that further education on the benefits of non-invasive ventilation are needed," he said. The study's title is, "Discrepancies between recent management practices in ALS and AAN evidence-based practice parameter, as revealed by the ALS patient care database."
|
