STOCKHOLM, Sweden — Approximately 7000 patients with Parkinson's disease die annually in the United States because of a lack of access to a neurologist, a new estimate suggests.
The results were presented at the International Parkinson and Movement Disorder Society (MDS) 18th International Congress of Parkinson's Disease and Movement Disorders.
"It is important to have a neurologist involved in the care of Parkinson's disease patients from the beginning," lead author, Peter Schmidt, PhD, National Parkinson Foundation, Miami, Florida, commented to Medscape Medical News. "We need better systems to make this happen."
Christopher G. Goetz, MD, director of the Parkinson's Disease and Movement Disorder program at Rush University Medical Center, Chicago, Illinois, who was not involved in this study, points out that Parkinson's disease is not a particularly common disorder that generalists will see on an everyday basis.
"In contrast, in a neurological practice, community or academic, Parkinson's disease is a common disorder so that neurologists have much more exposure to patients in all stages of the disease," he said.
"Further, educational efforts related to Parkinson's disease are part of almost all general neurology meetings, local, regional, and national," Dr. Goetz added. "The data from this current study may be debated in terms of the details of the analysis, but they strongly show that neurological care and expertise favors a positive outcome for patients affected by Parkinson's disease."
The study started with an estimate of a 22% reduced mortality rate for patients with Parkinson's who had regular care from a neurologist. This was reported by a group led by Alison Willis, MD, University of Pennsylvania, Philadelphia, and published in Neurology in 2011.
For the current analysis, Dr. Schmidt and Dr. Willis used this result, together with statistics on death rates from Parkinson's disease obtained from the Centers for Disease Control and Prevention (CDC) and Medicare records on how frequently patients were seen by a neurologist.
From the CDC data, they estimate that 48,140 patients with Parkinson's disease died in 2011. The Medicare records showed that 32% of patients with Parkinson's disease had never seen a neurologist, 12% had seen a neurologist once in a 4-year period, 27% had seen a neurologist more than once but less than annually, and 29% saw a neurologist annually or more.
On the basis of these data, the researchers computed the total number of deaths prevented by neurologist care and the number expected should every patient receive neurologist care. The benefit of neurologist access of intermediate frequency was modeled as 40% of the benefit of frequent care.
4645 Deaths Currently Prevented
Results showed that improved survival for patients receiving neurologist care prevented 4645 deaths in 2011 and that the extension of neurologist care to patients not currently receiving it would have further reduced overall mortality by another 6967 patients.
Dr. Schmidt told Medscape Medical News that there is no system in place in the United States for referral of patients with Parkinson's disease to neurologists. "Some patients are advised by their primary care doctors to see a neurologist and some just decide to go on their own accord. It is an ad hoc process."
He added: "There is a general lack of awareness that an expert makes a difference, and it is often a hassle to go to see an expert — a longer drive, and there might be a long wait to get an appointment. Most neurologists have a waiting list. Capacity is a major problem. There are not enough neurologists, and fewer still who are experts in movement disorders."
Dr. Schmidt says that awareness of the importance of good expert care needs to be raised. "If neurologist care was a drug then it would be advertised by a pharmaceutical company and people would feel they had a right to it. But expert care probably makes a greater difference than that of a good drug."
He believes that funding is not a big issue. "Money is probably the least of the problems. Willis et al have previously shown that the total costs to the healthcare system for seeing an expert are actually lower as the increased physician fees are more than offset by reduced inpatient and nursing home care. It's healthier by every measure."
He concluded: "We need to train more neurologists and build a system for referrals. Referrals need to systematic rather than the ad hoc process we have now."
International Parkinson and Movement Disorder Society (MDS) 18th International Congress of Parkinson's Disease and Movement Disorders. LBA 24.
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Cite this: Neurologist Care Could Prevent 7000 Parkinson's Deaths a Year - Medscape - Jun 19, 2014.