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Abstract Details

Does Pseudobulbar Affect Influence Healthcare Conversations in patients with Amyotrophic Lateral Sclerosis?
Practice, Policy, and Ethics
P8 - Poster Session 8 (8:00 AM-9:00 AM)
7-007
Neurologist-in-Training Clinical Ethics Elective Fellowship 
Pseudobulbar affect (PBA) is a neurological disorder of emotional expression characterized by an inability of a person to control crying or laughing spells. PBA is present in approximately half of individuals with Amyotrophic Lateral Sclerosis (ALS). We examined whether PBA symptoms influence conversations in care at the LSUHSC ALS clinic.
Twenty-five ALS patients with PBA diagnosis were given a survey regarding conversations involving goals of care discussions, as well as decisions about medications, respiratory and nutritional needs. The Center for Neurologic Study-Liability Scale (CNS-LS) was used to screen for PBA, and the Amyotrophic Lateral Sclerosis Cognitive Behavioral Screen was used to assess for cognitive impairment and behavioral changes in patients.
All participants demonstrated an understanding of the topics reviewed at their visit and identified goals of care discussions accurately. Twelve percent of participants (3/25) endorsed difficulty controlling their emotions at the time of the visit and four percent (1/25) indicated that abnormal affective symptoms interfered in their participation in healthcare conversations. Zero participants felt that their doctor treated them differently because of their abnormal affect and all of them denied that questions or conversations were deferred from them to their caretaker because of abnormal affective symptoms.

The vast majority of ALS patients with PBA (24/25) did not perceive any influence of PBA symptoms on healthcare conversations in our ALS clinic; all of them reported adequate engagement and autonomy in these conversations. Our ALS clinic includes a specialized, multidisciplinary team with substantial knowledge and understanding of PBA symptoms which resulted in our providers successfully engaging patients in conversations of care without any influence from their abnormal affect. Follow-up research is planned to examine the potential influence of PBA symptoms on healthcare conversations in less experienced settings, such as primary care, general neurology, or nursing homes.

 
Authors/Disclosures
Aditi V. Varma-Doyle, MD (Brigham and Women's Hospital, Mass General Brigham)
PRESENTER 		Dr. Varma-Doyle has nothing to disclose.
Nicole Villemarette-Pittman, PhD (LSUHSC-NONeurology) Dr. Villemarette-Pittman has received personal compensation in the range of $50,000-$99,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for Elsevier.
Brian J. Copeland, MD (LSU Health Sciences Center-New Orleans) Dr. Copeland has received personal compensation in the range of $5,000-$9,999 for serving on a Speakers Bureau for Teva Neurosciences. The institution of Dr. Copeland has received research support from Ipsen Biopharmaceuticals.