MSAA Survey Reveals Surprising Results: Involuntary Crying and Laughing is Reported by More People With MS than Expected
MS can impact not only physical and cognitive abilities, but also a person’s emotional wellbeing. In cooperation with the research organization Infogroup/ORC and supported by an unrestricted educational grant from Avanir Pharmaceuticals, the Multiple Sclerosis Association of America (MSAA) conducted an independent, online survey of almost 20,000 of its members in the fall of 2010. The purpose of this survey was to better understand the extent and impact of a particularly challenging neurological condition known to occur among people living with MS: pseudobulbar affect (PBA).
PBA is a condition that occurs in some people with certain neurological conditions, including MS, ALS (Lou Gehrig’s disease), stroke, traumatic brain injury, Alzheimer’s disease and others. It is characterized by exaggerated and inappropriate laughter and/or crying. During these emotional outbursts, the magnitude of the response is typically too extreme for the situation, and/or it may be inappropriate for the setting – such as laughing at a funeral or crying at a funny movie. These episodes can occur frequently, suddenly, and uncontrollably. Because of the crying episodes, PBA is often mistaken for depression and as a result, PBA is under-recognized. Unpredictable PBA episodes can cause embarrassment and distress leading to a significant impact on a person’s employment, family relationships, social interactions, and overall quality of life.
MSAA’s goal was to survey our members to see how many people were affected by PBA and to what degree it impacted their lives. The results were surprising in both areas.
A total of 5,229 people completed the online survey. Of these respondents, 2,504* or 48 percent reported experiencing symptoms of PBA based on their answers to a scientifically developed measurement scale.** This percentage is higher than the estimated 10 to 15 percent of the MS population that has been cited as potentially being affected by PBA.
Our results suggest that PBA might be more widespread in the MS population than was previously thought. Additionally, the frequency of these episodes and their impact on daily life were also considerable.
Almost 20 percent of those who reported exhibiting symptoms of PBA stated that episodes of involuntary crying and/or laughing occurred "frequently" or "often." In addition, 48 percent of those reporting PBA symptoms found their episodes to be "burdensome," almost one third of whom reported that their episodes were either "very" or "extremely" burdensome. While in most cases PBA was not considered more burdensome than their other MS symptoms, about one in four respondents indicated that PBA episodes contributed to difficulty in keeping friends or contributed to becoming housebound. Additionally, one in six indicated that PBA episodes contributed to difficulty in maintaining employment. (View a summary of the results of the survey.)
For many who suffer from this unpredictable and uncontrollable condition, PBA can be debilitating, potentially interfering with many aspects of one’s professional, personal, and social life. The FDA has recently approved the first treatment for PBA, Nuedexta™, which is available in capsule form. (For more information about Nuedexta, visit www.nuedexta.com.)
The results of MSAA’s survey may prove valuable as this once "hidden" condition associated with MS becomes more recognized and our ability to treat PBA improves. If you are affected by the symptoms associated with PBA, you are encouraged to discuss them with your physician.
View MSAA’s article on pseudobulbar affect (PBA) and the approval of Nuedexta.
* Of the 2,504 who reported behaviors (experiences) associated with PBA, 2,389 identified themselves as having MS and an additional 115 care partners or family members completed the survey on behalf of a person with MS.
** Center for Neurologic Study-Lability Scale (CNS-LS)
To speak with one of MSAA’s Helpline consultants, please call (800) 532-7667.
Written by Robert Rapp,Vice President of Programs and Partnerships, Multiple Sclerosis Association of America
Reviewed by Dr. Jack Burks, MSAA Chief Medical Officer