Living With the Burden of Pseudobulbar Affect: A Qualitative Analysis of the Effects of Education on Patient Experience

Abstract

Pseudobulbar affect (PBA) is associated with several neurological diseases and is underrecognized in clinical practice; however, PBA symptoms are often attributed to psychiatric or mood disorders rather than to neurological etiology. Until recently, there were no US Food and Drug Administration therapies approved for treating this condition, and there are currently few resources to support patients in the recognition and self-management of PBA symptoms. We evaluated the impact of a virtual education symposium on patient knowledge and self-efficacy via qualitative interviews. This evaluation of education impact provides unique insight into the experience of managing PBA symptoms; suggests that there is extensive need for educational resources to support patients with PBA and enable them to engage effectively with their providers; and affirms that online learning is an effective mechanism for delivering education to patients that enables them to more effectively self-manage symptoms in the context of chronic neurological conditions such as PBA.