A Sum Score to Define Therapy-Refractory Myasthenia Gravis: A German Consensus

Background and purpose: In 2017, eculizumab has been approved for treatment-refractory generalised myasthenia gravis (TRgMG). The German Myasthenia Foundation has published a consensus statement on the use of eculizumab, with a recent update. However, a treatment-refractory state is still ill-defined and the term warrants further clarification. We aimed at developing a sum score to operationalise the definition of a TRgMG status, which is easy- to-handle in clinical decision making. Methods: We established a structured consensus process according to the Delphi consensus methodology, with 12 members of the medical advisory board of the German Myasthenia Foundation. Accordingly, 4 consensus rounds were accomplished. Additionally, a literature survey covering the years 2004-2020 was done and relevant information offered to the consensus group. Consensus criteria were predefined. In the consensus process the relative importance of scoring items were to be consented, with a sum score of 20 and above indicating a TRgMG status. Results: The sum score considers the categories disease severity, inefficiency of antecedent therapies, cessation of therapies due to side effects, and long term stay on the intensive care unit. Categories were specified by a total of 13 scoring items. Eventually, the Delphi process developed an unanimous scoring consensus. Conclusion: We suggest a sum score to define treatment refractory state in generalised myasthenia gravis. Beyond clarifying the indication of eculizumab, this easy-to-handle score facilitates clinical decision making and offers new inclusion criteria for clinical studies that explore new therapeutic perspectives in myasthenia gravis treatment.

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Multidisciplinary Approach to Critical Care Design

Proceedings of the International Symposium on Human Factors and Ergonomics in Health Care ◽

10.1177/2327857916051008 ◽

2016 ◽

Vol 5 (1) ◽

pp. 31-37 ◽

Cited By ~ 1

Author(s):

Yuval Bitan ◽

Roy Ilan ◽

Steven D. Harris ◽

Keith S. Karn

Keyword(s):

Decision Making ◽

Information Exchange ◽

Multidisciplinary Approach ◽

Healthcare Professionals ◽

Clinical Decision Making ◽

Clinical Decision ◽

Relevant Information ◽

Optimal Decisions ◽

Source Of Information

The goal of this project is to improve clinical decision-making in the intensive care unit (ICU) environment. Making the optimal decisions depends on the quality and timeliness of the information available to the clinician. We believe that healthcare professionals will make better clinical decisions when the relevant information is collected and organized in a manner appropriate to support in situ decision-making. This is especially important in complex situations such those commonly encountered in the ICU environment. Currently there is no single integrated source of information that presents relevant information to clinicians. This project is developing methods to identify the core information required to engineer the information exchange among medical devices, and the information presentation layer, to support clinical decision-making in the ICU.

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Clinical Decision Making and Oral Motor Treatments

ASHA Leader ◽

10.1044/leader.ftr3.10082005.8 ◽

2005 ◽

Vol 10 (8) ◽

pp. 8-35 ◽

Cited By ~ 9

Author(s):

Heather M. Clark

Keyword(s):

Decision Making ◽

Clinical Decision Making ◽

Clinical Decision ◽

Oral Motor

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Debates in Dysphagia Management: How Do You Use Evidence-Based Practice in Your Dysphagia Patient Care?

Perspectives on Swallowing and Swallowing Disorders (Dysphagia) ◽

10.1044/sasd20.4.121 ◽

2011 ◽

Vol 20 (4) ◽

pp. 121-123

Author(s):

Jeri A. Logemann

Keyword(s):

Decision Making ◽

Patient Care ◽

Clinical Outcomes ◽

Clinical Judgment ◽

Clinical Decision Making ◽

Evidence Based Practice ◽

Clinical Decision ◽

Evidence Based ◽

Clinical Method ◽

Do So

Evidence-based practice requires astute clinicians to blend our best clinical judgment with the best available external evidence and the patient's own values and expectations. Sometimes, we value one more than another during clinical decision-making, though it is never wise to do so, and sometimes other factors that we are unaware of produce unanticipated clinical outcomes. Sometimes, we feel very strongly about one clinical method or another, and hopefully that belief is founded in evidence. Some beliefs, however, are not founded in evidence. The sound use of evidence is the best way to navigate the debates within our field of practice.

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