The following article is part of coverage from the American Academy of Neurology’s Annual Meeting (AAN 2020). Due to the global COVID-19 pandemic, the Academy made the necessary decision to cancel the meeting originally scheduled for April 25–May 1, 2020, in Toronto. While live events will not proceed as planned, readers can click here catch up on the latest research intended to be presented at the meeting.

A majority of patients with amyotrophic lateral sclerosis (ALS) and a diagnosis of pseudobulbar affect (PBA) do not believe their PBA symptoms have an effect on healthcare conversations in ALS clinics, according to research intended to be presented at the annual meeting of the American Academy of Neurology (AAN 2020).

A total of 25 patients with ALS and a PBA diagnosis were surveyed about their conversations with caregivers about their care goals. In addition, participants were surveyed about care decisions regarding medications, respiratory, and nutritional needs. To screen for PBA, the investigators used the Center for Neurologic Study-Liability Scale (CNS-LS). Cognitive impairment and behavioral changes were assessed with the ALS Cognitive Behavioral Screen.

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Approximately 12% (n=3) of participants endorsed items that described difficulties in controlling emotions at the time of the clinic visit. Another 4% (n=1) of patients endorsed abnormal affective symptoms interfering in their ability to participant in healthcare conversations.

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None of the surveyed participants suggested their doctor treated them differently because of abnormal affect. Additionally, none of the patients said their doctor deferred questions or conversations away from them to their caretaker as a result of of abnormal affective symptoms.

Study investigators noted that the planning phase of additional follow-up research is underway, with this research examining “the potential influence of PBA symptoms on healthcare conversations in less experienced settings, such as primary care, general neurology, or nursing homes.”


Varma-Doyle A, Villemarette-Pittman N, Copeland B. Does pseudobulbar affect influence healthcare conversations in patients with amyotrophic lateral sclerosis? Intended to be presented at the 2020 annual meeting of the American Academy of Neurology. 

Visit Neurology Advisor‘s conference section for complete AAN 2020 coverage.