FOR IMMEDIATE RELEASE: February 28, 2020
CONTACT: Lori Quinn, lq2165@tc.columbia.edu, 212-678-3424; Patricia Lamiell, lamiell@tc.columbia.edu
New York, NY — The Huntington Study Group – the world’s first and largest collaborative network of experts on Huntington’s disease – has announced Clinical Guidelines for Physical Therapy in Huntington’s disease. The guidelines were recently published in the journal Neurology by a group led by Teachers College’s Lori Quinn, Associate Professor of Movement Sciences & Kinesiology and Director of the Neurorehabilitation Research Lab at Teachers College, Columbia University.
The guidelines are based on a systematic review of 23 previous quantitative studies and three qualitative studies, which finds strong evidence that aerobic exercise, alone or in combination with resistance training, can improve fitness and motor function in Huntington’s patients. It also finds that supervised gait training is effective to improve gait in persons with the disease.
Huntington’s disease is a hereditary, degenerative brain-based disorder which generally appears 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 begin. 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.
The gene for Huntington’s 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.
“Until we find a cure for Huntington’s disease, the primary goal is to optimize function and quality of life for our patients,” 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. “These guidelines promote evidence-based care for the patients of today – by HD specialists and non-specialists alike – while at the same time identifying topics for future research.”
Says Quinn, “Until now, there has been limited knowledge on the part of health care professionals about the role of physical therapy in Huntington’s disease. For a long time, we could say that we thought there were benefits, but there was no evidence base we could cite. 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.”
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 Huntington’s gene. The new guidelines represent an important first step in winning insurance reimbursement for people with Huntington’s disease, Quinn says.
“One of the main reasons we publish guidelines like these is to provide an answer if insurance companies say, ‘This is a degenerative disease and there’s no evidence that exercise has any benefits.’ 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, that’s a pretty tough argument to refute.”
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.
“Ultimately, I think we’re going to be looking at a model that is very similar to Parkinson’s disease, where hundreds of studies have shown the importance of exercise, and where physical therapy is used as a first-line approach,” Quinn says.
The report was coauthored by Teachers College 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.
[Read a story on Quinn’s past work, view a podcast about the recent study, or learn more about Huntington’s disease at www.huntingtonstudygroup.org).]