Prism Registry: A Novel Tool To Estimate The Prevalence Of Pseudobulbar Affect Symptoms

OBJECTIVE: To prospectively estimate the prevalence of pseudobulbar affect (PBA) symptoms across six commonly associated disease states. BACKGROUND: PBA is a neurological disorder of emotional expression, occurring secondary to a variety of neurological conditions and characterized by uncontrollable, inappropriate outbursts of laughing and/or crying. Although US prevalence of PBA is estimated at about 2 million persons, PBA is thought to be under-recognized. Disease registries are powerful tools for obtaining epidemiologic data. DESIGN/METHODS: The PBA Registry Series (PRISM) was established to prospectively estimate the prevalence of PBA symptoms in a clinic sample. Participating centers had Institutional Review Board approval. Investigators were asked to enroll ≥20 patients with Alzheimer9s disease (AD), amyotrophic lateral sclerosis (ALS), multiple sclerosis (MS), Parkinson9s disease (PD), stroke, or traumatic brain injury (TBI); patients were not screened for depression or other psychiatric disorders. Participants (or their caregivers) completed the Center for Neurologic Study–Lability Scale (CNS-LS; validated as corresponding to physician diagnosis of PBA in ALS and MS at CNS-LS thresholds ≥13 and ≥17, respectively) and a scale assessing impact of their neurological condition on quality of life (QOL). Demographics and use of antipsychotic/antidepressant medications were also recorded. RESULTS: The PRISM registry closed in September 2012 with 5290 participants. Of these, 1944(36.7%) had PBA symptoms defined as a CNS-LS score ≥ 13 (29.3%, AD;44.8% ALS; 45.8%, MS; 26.0%, PD; 37.8%, stroke; and 52.4%, TBI). Patients with CNS-LS ≥13 reported a greater impact of their neurologic condition on QOL (6.7 ;0-to-10[11-point-scale]) than patients with CNS-LS P P CONCLUSIONS: PRISM provides novel insight into PBA symptom prevalence by prospectively evaluating a large number of patients across diagnoses and clinical settings. Follow-on studies are planned. Supported by: Avanir Pharmaceuticals, Inc. Disclosure: Dr. Brooks has received personal compensation for activities with Biogen Idec, Avanir Pharmaceuticals, Acorda Therapeutics, Cytokinetics, Synapse, and the National Institute of Neurological Disorders and Stroke. Dr. Brooks has received research support from Biogen Idec, Avanir Pharmaceuticals, Cytokinetics, Neuraltus, GlaxoSmithKline, Inc., and the National Institute of Neurological Disorders and Stroke. Dr. Crumpacker has nothing to disclose. Dr. Fellus has received personal compensation for activities with Avanir Pharmaceuticals. Dr. Fellus holds stock and/or stock options in Avanir Pharmaceuticals. Dr. Kantor has received consulting fees from Avanir Pharmaceuticals, Inc. Dr. Kaye has received personal compensation for activities with Avanir Pharmaceuticals as an employee. Dr. Kaye has received research support from Avanir Pharmaceuticals.