Dataset Information

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.

SUBMITTER: Turell W

PROVIDER: S-EPMC7786644 | biostudies-literature | 2020 Dec

REPOSITORIES: biostudies-literature

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

Turell Wendy W Roc Anne A Pioro Erik E Howson Alexandra A

Journal of patient experience 20200302 6

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 educa ...[more]

PMID: 33457582

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Project description:Pseudobulbar affect (PBA) is a dysfunction of emotional expression characterized by involuntary outbursts of crying or laughing disproportionate or unrelated to mood, occurring in patients with various underlying neurologic disorders. This review describes the clinical data supporting dextromethorphan (DM) hydrobromide combined with quinidine sulfate (Q) as treatment of PBA and briefly surveys the ongoing debates concerning the terminology for dysfunction of emotional expression, as well as the ongoing searches for its brain substrates. Until recently, pharmacologic intervention consisted chiefly of off-label antidepressants. In October 2010, however, DM/Q at 20/10 mg twice daily received approval from the United States Food and Drug Administration for PBA in any setting, and in June 2013, dosages of 20/10 and 30/10 mg twice daily (labeled as 15/9 and 23/9 mg, respectively, DM/Q base) received approval from the European Medicines Agency. DM is an uncompetitive N-methyl-d-aspartate (NMDA) glutamate receptor antagonist, a sigma-1 receptor agonist, and a serotonin and norepinephrine reuptake inhibitor. To block DM hepatic metabolism, thereby increasing DM bioavailability, Quinidine, a cytochrome P450 2D6 inhibitor, is coadministered at a dosage well below those for treating cardiac arrhythmia. Three large-scale DM/Q trials have utilized PBA-episode counts and the Center for Neurologic Study-Lability Scale (CNS-LS), a validated PBA rating scale, to measure efficacy. In a 4-week study of patients with PBA in amyotrophic lateral sclerosis (ALS), DM/Q 30/30 mg was superior to its component drugs. A 12-week, double-blind, placebo-controlled study of DM/Q 30/30 mg showed similar efficacy in patients with PBA in multiple sclerosis (MS). A subsequent 12-week study of patients with PBA and ALS or MS showed superiority to placebo for the 20/10 and 30/10 mg doses. Efficacy was maintained during a 12-week, open-label extension (30/10 mg dose), with further improvement of mean CNS-LS scores. Across these studies, DM/Q was generally safe and well tolerated, with no evidence of clinically relevant cardiac or respiratory effects. DM/Q is being studied (currently unapproved) for conditions including agitation in autism and in dementia.

Project description:BackgroundQuality of care and patient safety rely on the ability of interprofessional teams to collaborate effectively. This can be trained through interprofessional simulation-based education (IPSE). Patient safety also relies on the ability to adapt to the complexity of such situations, an ability termed resilience. Since these needs are not explicitly addressed in IPSE, the aim of this study was to explore how central concepts from complexity-theory and resilience affect IPSE, from facilitators' perspective, when applied in debriefings.MethodsA set of central concepts in complexity-theory and resilience were introduced to facilitators on an IPSE course for nursing and medical students. In five iterations of focus groups interviews the facilitators discussed their application of these concepts by reviewing video recordings of their own debriefings. Video recordings of the interviews were subjected to coding and thematic analysis.ResultsThree themes were identified. The first, Concepts of complexity and resilience are relevant for IPSE, points to the applicability of these concepts and to the fact that students often need to deviate from prescribed guidelines/algorithms in order to solve cases. The second theme, Exploring complexity, shows how uncertainty could be used as a cue to explore complexity. Further, that individual performance needs to account for the context of actions and how this may lead to certain outcomes. Moreover, it was suggested that several ways to approach a challenge can contribute to important insight in the conditions for teamwork. The third theme, Unpacking how solutions are achieved, turns to needs for handling the aforementioned complexity. It illustrates the importance of addressing self-criticism by highlighting how students were often able to overcome challenges and find solutions. Finally, this theme highlights how pre-defined guidelines and algorithms still work as important resources to help students in transforming perceived messiness into clarity.ConclusionsThis study suggests that IPSE provides the possibility to explore complexity and highlight resilience so that such capability can be trained and improved. Further studies are needed to develop more concrete ways of using IPSE to account for complexity and developing resilience capacity and to evaluate to what extent IPSE can provide such an effect.

Dataset Information

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

Publications

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

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