Experts Publish Guidelines For Managing Behavioral Symptoms of HD

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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In a newly published set of guidelines, experts give suggestions for the management of some of the behavioral symptoms of Huntington’s disease. By making these guidelines available to both specialists and non-specialists, the hope is that better care and support can be given more consistently to Huntington’s patients and their loved ones.

The guidelines were explained in a study, “Clinical Management of Neuropsychiatric Symptoms of Huntington Disease: Expert-Based Consensus Guidelines on Agitation, Anxiety, Apathy, Psychosis and Sleep Disorders,” published in the Journal of Huntington’s Disease.

When it comes to making general guidelines for how doctors should treat people with a disease, best practice is to develop such guidelines based on robust data from large clinical trials that directly test what works and what doesn’t for people with that disease.

However, for rarer conditions, such as Huntington’s, there isn’t a large enough patient population for such studies to be done. In these cases, “expert opinion obtained by methods to rigorously develop consensus” is an acceptable option to develop clinical practice guidelines.

To this end, an international, multidisciplinary panel of 11 experts was asked to create a series of statements about five behavioral symptoms of Huntington’s: agitation, anxiety, apathy, psychosis, and sleep disorders.

These statements were sent to 84 Huntington’s experts around the world (mostly North America, Europe, and Australia), who were asked to rate their level of agreement or disagreement with each.

Importantly, even though there’s not a lot of hard data from clinical trials, there was a lot of agreement among the experts: 110 statements were originally developed, and 98 of these were met with significant overall agreement.

The published guidelines include advice broken into three categories for each of the five behavioral domains: general (e.g. modifying the individual’s environment), behavioral (e.g. education and activities), and pharmacological (e.g. the prescription of antidepressants).

“While many of the recommendations are like those contained in general psychiatric guidelines and guidelines for other disease areas (e.g., Alzheimer’s disease, Parkinson’s disease), the present work is intended to inform clinicians, scientists, patients, and carers on the management of these neuropsychiatric symptoms specifically in [Huntington’s disease],” the researchers stated.

“Clinical experience indicates that most of the neuropsychiatric symptoms discussed are treatable using non-pharmacologic and pharmacologic strategies developed for use in other patient groups (e.g. Alzheimer’s disease),” Karen E. Anderson, MD, of the Departments of Psychiatry and Neurology of Georgetown University, said in a press release.

“Treatment of the symptoms as experienced in [Huntington’s disease] generally follows the same recommendations as in other patient groups. However, the management of neuropsychiatric symptoms in HD is frequently more complex because symptoms often coexist, and treatment decisions should be adapted to cover all symptoms while limiting the simultaneous use of multiple drugs,” she said.

The guidelines stress the importance of educating not just patients and healthcare professionals, but also families and caregivers, about the behaviors that can manifest in Huntington’s and how best to treat them.

It is hoped that making these guidelines available will encourage people with Huntington’s to seek out treatment that can help them. “These guidelines convey the important message that we have treatments available now for many neuropsychiatric symptoms of HD,” Anderson said. “This should encourage patients to seek care. They also help non-specialist clinicians understand that HD is a not a hopeless condition.”