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New Brain Injury Association Survey Reveals Nearly 80 Percent of Respondents Suffer Added Burden of Neurologic Condition with Debilitating Social Impact


News provided by

Brain Injury Association of America

Jan 06, 2011, 09:44 ET

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Less Than 10 Percent of Survey Respondents are Aware that Involuntary Laughing and Crying—Pseudobulbar Affect—is a Treatable Condition

VIENNA, Va., Jan. 6, 2011 /PRNewswire-USNewswire/ -- As the field of medicine continues to understand the complexities of brain injury, a survey released today by the Brain Injury Association of America (BIAA) indicates that approximately 80 percent of survey respondents experience symptoms of an additional neurologic condition called pseudobulbar affect (PBA). PBA is thought to be caused by structural damage in the brain due to injury or disease and causes involuntary and unpredictable outbursts of laughing or crying, often in socially inappropriate situations.

In the fall of 2010, BIAA conducted a survey among the organization's constituents, including a range of people living with brain injury and caregivers (n=311). To complete the survey, the respondents were required to score a 13 or greater on the Center for Neurologic Study Lability Scale (CNS-LS), which assesses the presence and severity of PBA symptoms. Data demonstrate that nearly 80 percent (n=248) of the qualified respondents experience PBA episodes, with approximately half (48%) indicating that they are affected by PBA on a regular basis. Yet in stark contrast to the prevalence of this condition among respondents with brain injuries, only seven percent are aware of the term pseudobulbar affect.

"Many don't understand that a brain injury is only the beginning of an ongoing neurological disease," said Susan H. Connors, President and Chief Executive Officer of the Brain Injury Association of America. "Similarly, pseudobulbar affect is a misunderstood and under diagnosed, yet separate and treatable medical condition. Recognizing the complexities of these neurologic conditions and how they correlate helps to pave the way for improving quality of life among individuals with a brain injury."

Survey results also illustrated the negative effect on quality of life that PBA has on people with brain injury and caregivers. In addition to the frequency of PBA symptoms reported, more than one-third (35%) of people with brain injury consider these episodes of involuntary crying and laughing to be extremely or very burdensome. Approximately six in 10 respondents reported that PBA episodes interfere with social activities including spending time with friends and family. The survey respondents with brain injury reported leaving social functions abruptly to avoid embarrassing themselves and their family members. Some respondents note that their frequent outbursts are misunderstood or misconstrued as offensive and can interfere with work or school.  The survey also showed:

  • PBA interferes extremely, very or somewhat often with everyday activities such as spending time with friends and family (62%), talking on the phone (47%), interacting with nurses or other healthcare professionals (44%), and dining out (38%).
  • Six in ten of the respondents also indicate that PBA episodes have contributed to difficulty making and keeping friends.
  • Four in ten say PBA episodes contributed to becoming housebound.

"There are people with brain injury who have PBA that are not being identified and treated," said Dr. Brent Maisel, Medical Director for the Brain Injury Association of America. "Based on the BIAA survey results and recent progress in treating PBA, I am hopeful that more brain injury patients will begin the necessary dialogue with their doctors to help minimize the burden of this often stressful and disruptive condition."

Even though people with brain injury and caregivers report that treatment for PBA is extremely or very important (39%), two thirds remain untreated for the condition (67%).  Until recently there have been no approved treatment options and 79 percent of those who are treated are not satisfied.  

The BIAA conducted the survey via www.biausa.org and their magazine, The Challenge, in conjunction with Avanir Pharmaceuticals, Inc. (Nasdaq: AVNR) to learn more about the prevalence, severity and impact of PBA among people with brain injury and the level of awareness of the condition among both people with brain injury and their caregivers.  The majority of survey respondents suffered traumatic brain injuries (81%), and 85 percent experienced moderate to severe injuries. Among those surveyed, more than two-thirds (69%) sustained a brain injury more than two years ago.  The mean age of respondents was 42 years old.

About Pseudobulbar Affect

Patients suffering from a serious neurologic disease or brain injury may also suffer the added burden of pseudobulbar affect (PBA). PBA is a neurologic condition caused by underlying structural damage in the brain which triggers involuntary, unpredictable and disruptive outbursts of laughing or crying. More than a million Americans suffer from PBA. For more information about PBA, please visit www.PBAinfo.org.

About Brain Injury Association of America

The Brain Injury Association of America is the voice of brain injury. Through advocacy, education and research, BIAA and its nationwide network of more than 40 chartered state affiliates bring help, hope and healing to the millions of Americans who have a lifelong disability because of brain injury as well as their families and the professionals who serve them.

About Brain Injuries

An estimated 1.7 million children and adults in the U.S. sustain a traumatic brain injury (TBI) and another 795,000 individuals sustain an acquired brain injury (ABI) from non-traumatic causes each year. Currently more than 3.1 million children and adults in the U.S. live with a lifelong disability as a result of TBI and 6.4 million have a disability due to stroke. For more information about brain injuries and the Brain Injury Association of America, visit www.biausa.org.

SOURCE Brain Injury Association of America

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