More than half of stroke survivors suffer added burden of little known neurologic condition

October 18, 2010, National Stroke Association

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 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 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 and the level of awareness of the condition among both patients and their caregivers.

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