A study suggests an extensive need for educational resources to support patients with pseudobulbar affect (PBA) and enable them to engage with their providers. The results were published in the Journal of Patient Experience.
As part of this educational program, titled Living with the burden of PBA: Education for Patients and Caregivers, researchers interviewed 13 people with PBA and caregivers for people with PBA, all of whom were recruited via a digital marketing campaign. The population all had ongoing PBA symptoms or showed an interest in self-care strategies. The study assessed patient knowledge and self-efficacy by way of qualitative phone interviews, 30-45 mins in length, which were designed to explore both patient and caregiver understanding of PBA treatment, strategies to improve PBA quality of life, and current PBA treatment options.
According to the results, participants painted a grim picture of low physician awareness about PBA, both among primary doctors and neurologists. The researchers noted that Factors that encouraged patients to talk with their physicians included direct-to-consumer (DTC) advertising about the FDA-approved PBA medication dextromethorphan/quinidine (DM/Q) and observed that exposure to such advertising prompted patient/physician talks about PBA symptoms; condition symptoms which represented a “new normal” for participants, characterized by “lack of control” in functionality and social status.
Participants emphasized that exposure to educational content validated their PBA diagnosis as a neurological instead of psychiatric condition; and this recognition provided both hope and reassurance that participants were not alone in their PBA experience.
“This evaluation affirms that online learning is an effective mechanism for delivering education to patients and providing health-related information and resources that enable them to more effectively self-manage symptoms in the context of chronic neurological conditions such as PBA,” the researchers concluded.
Keywords: pseudobulbar affect, online education, mixed methods evaluation research, patient experience