The Huntington Study Group ā the worldās first and largest collaborative network of experts on Huntingtonās disease ā has announced Clinical Guidelines for Physical Therapy in Huntingtonās disease. The guidelines were recently in the journal Neurology by a group led by ¶¶Ņõappās Lori Quinn, Associate Professor of Movement Sciences & Kinesiology and Director of the Collegeās Neurorehabilitation Research Lab.
The study concludes that there is strong evidence to support aerobic exercise, alone or in combination with resistance training, to improve fitness and motor function, and supervised gait training to improve gait in persons with Huntingtonās disease.
Huntingtonās disease is a hereditary, degenerative brain-based disorder which generally manifests in people during mid-life. The disease damages nerve cells in the brain, affecting movement, memory, behavior and the ability to think clearly. Patients usually die within 10 to 20 years after symptoms appear. The condition is relatively rare, affecting about one in every 10,000 people, or about 30,000 people in the United States. Another 150,000 people in this country are at risk for developing the condition.
Until now, there has been limited knowledge on the part of health care professionals about the role of physical therapy in Huntingtonās disease. But over the past 15 years, there have been a growing number of studies confirming that there are indeed benefits, to the point where we could do a systematic, structured and rigorous review that enabled us to develop guidelines aimed at therapists and other clinicians.
āLori Quinn
The gene for Huntingtonās disease was identified in 1993, and a genetic test can reveal whether a person has inherited the condition. However, no treatments are currently available to stop or reverse the disease, though there are medications that can help keep symptoms under control.
āUntil we find a cure for Huntingtonās disease, the primary goal is to optimize function and quality of life for our patients,ā said Martha Nance, Chair of the HSG Family Education Committee and Director of the HDSA Center of Excellence at Hennepin County Medical Center, in announcing the new guidelines. āThese guidelines promote evidence-based care for the patients of today ā by HD specialists and non-specialists alike ā while at the same time identifying topics for future research.
A group led by TC's Lori Quinn recently published new guidelines in the journal Neurology for conducting physical therapy with people with Huntington's disease. (Photo: TC Archives)
The report led by TCās Quinn (and co-authored by TC alumnus and Columbia University faculty member and occupational therapist Ashwini Rao, as well as researchers at Cardiff University in the United Kingdom, The Ohio State University and Wayne State University) is based on a systematic review of 23 previous quantitative studies and three qualitative studies.
āUntil now, there has been limited knowledge on the part of health care professionals about the role of physical therapy in Huntingtonās disease,ā says Quinn. āFor a long time, we could say that we thought there were benefits, but there was no evidence base we could cite.
āBut over the past 15 years, there have been a growing number of studies confirming that there are indeed benefits, to the point where we could do a systematic, structured and rigorous review that enabled us to develop guidelines aimed at therapists and other clinicians.ā
Quinn herself is working on a study that could provide preliminary evidence about whether physical therapy delays the onset of symptoms in patients known to have the Huntingtonās gene.
[Read a story on Quinnās work, and in which Quinn and others discuss the new guidelines. Learn more about Huntingtonās disease at ).]
Meanwhile, it is now clear that exercise does help improve symptoms, including overall fitness, motor function and walking. There is also some evidence to suggest improvements in balance, breathing function and breathing capacity.
āUltimately, I think weāre going to be looking at a model that is very similar to Parkinsonās disease, where hundreds of studies have shown the importance of exercise, and where physical therapy is used as a first-line approach,ā Quinn says.
The new guidelines also represent an important first step in winning insurance reimbursement for people with Huntingtonās disease, Quinn says.
āOne of the main reasons we publish guidelines like these is to provide an answer if insurance companies say, āThis is a degenerative disease and thereās no evidence that exercise has any benefits.ā Individuals with degenerative disease should be able to get ongoing therapy to help maintain their function, and if we can show evidence that exercise and physical therapy helps minimize motor impairment, workdays lost and other issues, thatās a pretty tough argument to refute.ā