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 College’s 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 Huntington’s disease.
Huntington’s 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 Huntington’s 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.
—Lori Quinn
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.
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 TC’s 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.
“Until now, there has been limited knowledge on the part of health care professionals about the role of physical therapy in Huntington’s disease,” says Quinn. “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.
[Read a story on Quinn’s work, and listen to a podcast in which Quinn and others discuss the new guidelines. Learn more about Huntington’s disease at www.huntingtonstudygroup.org).]
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 new guidelines also 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.”