National Stroke Association Survey Reveals More Than Half of Stroke Survivors Suffer Added Burden of Little Known Neurologic Condition
Pseudobulbar Affect Impacts Majority of Stroke Survivors, But Few Have Any Understanding of Condition
CENTENNIAL, CO – October 18, 2010 – A survey released today by National Stroke Association shows that 53 percent of stroke survivor respondents suffer from symptoms of another neurologic condition called pseudobulbar affect (PBA), a condition thought to be caused by structural damage in the brain due to injury or disease. PBA causes involuntary and unpredictable outbursts of laughing or crying, often in socially inappropriate situations. Even though a significant proportion of stroke survivors suffer from PBA, fewer than one in five are familiar with the condition.
Survey results demonstrated that of the total National Stroke Association respondents, over half (304 of 578 respondents) had symptoms of PBA as determined by a score of 13 or greater on the Center for Neurologic Study Lability Scale (CNS-LS), the standard, self-report tool used to assess the presence and severity of PBA symptoms. Of these respondents, approximately 27 percent had CNS-LS scores that indicated moderate-to-severe symptoms of PBA. More than one-quarter (27%) indicated that they experience PBA outbursts frequently or often.
In addition to the potential prevalence of PBA among stroke survivors, the results illustrated the negative effect on quality of life that PBA has on stroke survivors and their caregivers. About four in 10 respondents reported that PBA episodes interfere with their social activities including spending time with friends and family. Likewise, about one-third of the respondents indicate that PBA episodes have contributed to difficulty in maintaining relationships or becoming housebound.
“With more than six million stroke survivors in the United States, the prevalence and burden of pseudobulbar affect in the stroke community is significant,” said James Baranski, CEO, National Stroke Association. “Not only are these survivors recovering from a serious neurologic injury, but they are also dealing with the anxiety, embarrassment and social isolation that results from PBA episodes – all at a time when support from family and friends is needed most.”
Other key findings from the National Stroke Association survey include:
More than 50 percent of stroke survivors with PBA symptoms consider the episodes of involuntary crying and laughter to be burdensome.
PBA interferes extremely, very or somewhat often with everyday activities such as spending time with friends and family (38%), talking on the phone (32%), interacting with nurses or other healthcare professionals (24%), and attending church or religious services (23%).
Only about a third of those with PBA symptoms are treated for their episodes (38%), and only half of treated patients are satisfied with their treatment.
Other involuntary emotional episodes frequently experienced include frustration, irritability, agitation and anger.
"The results of the National Stroke Association survey on PBA confirm what I see on a regular basis in my practice as it pertains to stroke survivors," said Richard Zorowitz, MD, Chief, Department of Physical Medicine and Rehabilitation, Johns Hopkins Bayview Medical Center. "This survey demonstrates that PBA is a common condition that stroke survivors must also manage. It can cause significant impairment in patients’ and caregivers' quality of life. The findings also reinforce the need for effective treatment options that help patients reduce the involuntary outbursts of laughing or crying and allow them to regain more control over their daily lives."
National Stroke Association conducted the survey in conjunction with Avanir Pharmaceuticals, Inc. to learn more about the prevalence and impact of PBA among stroke survivors and the level of awareness of the condition among both patients and their caregivers.
More than 795,000 people experience a stroke, also known as a brain attack, each year, making it the third leading cause of death in the U.S. and a leading cause of adult disability. For more information about stroke and National Stroke Association, visit www.stroke.org.
Patients suffering from 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 National Stroke Association
Established in 1984, National Stroke Association is the only national organization in the U.S. that focuses 100 percent of its efforts on stroke. The organization furthers its mission to lower the incidence and impact of stroke by developing compelling community outreach programs, calling for continued improvement in the quality of stroke patient care and educating both healthcare professionals and the general public about stroke. Visit www.stroke.org or call 1-800-STROKES (787-6537) for more information. Join National Stroke Association’s Facebook page for important regular updates about stroke at www.stroke.org/facebook.
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