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Resources for Professionals

Practice Resources

We offer a variety of materials for health professionals, such as webinars, manuals, diagnostic tools and other resources to become more familiar with MG. Materials are geared towards physicians, researchers, scientists, nurses, emergency medical professionals and others in the health care industry.

  • To download or order informational brochures for your office, please see here.

 

Emergency Management of Myasthenia Gravis: An Overview for First Responders

Speakers:

Dr. Michael Hehir, University of Vermont Medical Center
Dr. Amanda Guidon, Massachusetts General Hospital     

Session Description:

Myasthenia Gravis is a rare disease which causes fluctuating weakness in the voluntary muscle groups including breathing. MG may easily be mistaken for other neuromuscular diseases or the effects of substance abuse among other diagnoses. Myasthenic Crisis – a life threatening exacerbation of MG, can go unrecognized and possibly exacerbated by medical personnel unfamiliar with MG.   This is a 30 minute presentation which covers the Emergency Management of Myasthenia Gravis for Nurses and First Responders. Points are illustrated by case examples. This presentation was developed by the Education Committee of the Myasthenia Gravis Foundation of America.

Duration: 30 minutes
Credit Available: 0.5 CNE for Nurses
Education Level: Introductory

Click here to access this webinar.

 

3rd Edition of Myasthenia Gravis and Related Disorders Available Now!

The 3rd edition of Myasthenia Gravis and Related Disorders is available now. Written by former MGFA Board Member Henry Kaminski, MD and current M/SAB Chair Linda Kusner, PhD of George Washington University, the third edition outlines a range of significant advances in the study and understanding of myasthenia gravis. The overarching goal of this new edition is identical to the first and second -- to provide the clinician and the scientist with a common resource for understanding the profound achievements in the clinical, translational, and basic sciences of neuromuscular transmission disorders. Print and e-book versions are available for purchase by individuals and institutions via the Springer link here.

 

Myasthenia Gravis: A Manual for the Health Care Provider

In 2008, MGFA published the first comprehensive manual on myasthenia gravis specifically for health care professionals. This handbook is written as an aid for health care personnel who are involved in the care and management of MG patients. The manual is divided into sections for ease in assisting the health care professionals in their evaluation, diagnosis and management of MG patients. PDF Download.

Sections address issues related to:

  • Physician Information
  • Nursing
  • Anesthesia
  • Emergency Care
  • Psychosocial: From Diagnosis to Lifetime Management
  • Physical Therapy
  • Occupational Therapy
  • Speech Pathology and Swallowing
  • Dental Care
  • Guidelines for the Pharmacist

PDF Download available. You may also obtain the Manual as an ibook for iPad, iPhone and Mac - available for free here.

Printed copies are shipped at a cost of $12.00 plus shipping and handling each. CD copies are shipped at a cost of $3.00 plus shipping and handling each. Call the national office at (800) 541-5454 or order online here. 

 

 

Medications and Myasthenia Gravis (A Reference for Health Care Professionals) (PDF)

 

Quality of Life (QOL) Measure

The MGQOL 15: It is a survey designed to assess aspects of life related to myasthenia gravis. There is appropriate correlation between the 15 item MG-QOL 15 and other MG-specific scales (MGC, MG-ADL, and MG-MMT).  The MG-QOL 15 has construct validity in the clinical practice setting and represents an efficient and valuable to for assessing quality of life for patient with MG. However the magnitude of change required to indicate improvement or worsening is variable and depends on MG severity. The MG-QOL 15 can be completed by the patient or administered by the physician or trained clinic personnel or study coordinator.

  • Download the MGQOL15 here.

References: Burns, TM, Grouse CK, Conway MR, Sanders, DB, and mg composite and mg qol-15 study group.  Construct and concurrent validation of the MG-QOL 15 in the practice setting. Muscle Nerve. 2010;41(2):219-226.

Burns, TM, Grouse CK, Wolfe, GI, Conway MR, Sanders, DB; mg composite and mg qol-15 study group. The MG-QOL 15 for following health-related quality of life of patients with myasthenia gravis. Muscle Nerve 2011;43 (1):14-18

 

MG Activities of Daily Living (MG-ADL)

The MG-ADL profile provides a rapid assessment of MG symptom severity; it has been validated and shown to correlate with the QMG score. The MG-ADL correlates strongly with newer, validated MG outcome measures (MGC and MGQOL15). A 2 point improvement in the MG-ADL indicates clinical improvement.  The MG-ADL is useful as a research tool and in routine clinical management. The MG-ADL score can be administered by the physician or trained clinic personnel or study coordinator. Please contact Mapi Research Trust in order to get permission to use this scale.

References: Wolfe, GI, Herbelin L, Nations, SP, Foster, B, Bryan WW, Barohn RJ. Myasthenia gravis activities of daily living profile. Neurology. 1999;52:1487-1489

Muppidi S, Wolfe, GI, Conaway M, Burns, TM; MG composite and MG-QOL15 study group. MG ADL: still a relevant outcome measure. Muscle Nerve,2011;44(5):727-731.

 

Optional Instruments

The MGFA clinical classification, MGFA post intervention status (PIS) and MGFA therapy status are commonly used in clinical research and at times in clinical practice.

  1. The MGFA classification has some subjectivity in it when it comes to distinguishing mild (Class II) from moderate (Class III) and moderate (Class III) from severe (Class IV). Furthermore, it is insensitive to change from one visit to the next.
    Download the MGFA classification here.
  2. The MGFA PIS is a measure of post intervention status but is insensitive to small changes in MG status. It lacks definitions for improvement or worsening but relies on QMG or MGC definitions (see QMG and MGC sections).
    Download the MGFA-PIS here.
  3. The MGFA therapy status is a descriptive tool of current therapies and may be used in clinical practice and research.
    Download the MGFA therapy status here.
  4. The MG-MMT score is a sum of the strength of muscle groups, each of which is given a grade ranging from 0 (normal function) to 4 (complete paralysis). These are muscles that are routinely tested in MG patients.
    Download the MG-MMT score here.

References:

Jaretzki A 3rd, Barohn RJ, Ernstoff RM, Kaminski HJ, Keesey JC, Penn AS, Sanders DB. Myasthenia gravis: recommendations for clinical research standards. Task Force of the Medical Scientific Advisory Board of the Myasthenia Gravis Foundation of America. Neurology. 2000;55(1):16-23.

Sanders DB, Tucker-Lipscomb B, Massey JM. A simple manual muscle test for myasthenia gravis. Validation and comparison with the QMG score. Ann NY Acad Sci. 2003;998:440-444.

Benatar M, Sanders DB, Burns TM, Cutter GR, Guptill JT, Baggi F, Kaminski HJ, Mantegazza R, Meriggioli MN, Quan J, Wolfe GI; Task Force on MG Study Design of the Medical Scientific Advisory Board of the Myasthenia Gravis Foundation of America. Recommendations for myasthenia gravis clinical trials. Muscle Nerve. 2012;45(6):909-917.

 

Recommended Objective Measures of Improvement and Worsening in MG

Two scales are available. Either one can be used in the clinic and for research:
 

The Quantitative Myasthenia Gravis (QMG) Test

The QMG test is a standardized quantitative strength scoring system developed specifically for MG. The QMG has been validated and has been used by the investigators in several previous trials. The higher numbers are representative of more severe impairment. It was recommended by the earlier MGFA Task force report in 2000 as the measure of Improvement and Worsening. Recent data support the use of a 2- or 3- point of change in QMG as a criterion for minimal clinically significant change and depending on MG severity; in mild (QMG 0-9) to moderate disease (QMG 10-16), a 2-point change is clinically significant and a 3-point change is significant for severe MG (QMG >16). Though the most recent recommendation of the MGFA Task Force of 2012 is for using the MGC, prospective studies comparing the performance of MGC to that of QMG in detection of improvement and worsening are lacking. This would be of interest since minimal clinically significant change for QMG depends on baseline disease severity. QMG can be administered by a trained physician, research coordinator or clinical evaluator.
 

Download The Quantitative Myasthenia Gravis (QMG) Test:

The Manual (PDF) here. Please contact Mapi Research Trust in order to get permission to use this scale. This manual and the accompanying DVD have been designed to instruct clinical evaluators and physicians on how to perform the Quantitative Myasthenia Gravis (QMG) test. For the accompanying videotape contact the MGFA national office.

References:

Barohn RJ, McIntire D, Herbelin L, Wolfe GI, Nations S, Bryan WW. Reliability testing of the quantitative myasthenia gravis score. Ann NY Acad Sci. 1998;841:769-772.

Katzberg HD, Barnett C, Merkies IS, Bril V. Minimal clinically important difference in myasthenia gravis: outcomes from a randomized trial. Muscle Nerve. 2014;49(5):661-665.

 

The MG Composite (MGC)

The MG Composite has been shown to be a reliable and valid instrument for measuring clinical status of patients with MG in the practice setting and in clinical trials. This is the instrument recommended by THE TASK FORCE ON MG STUDY DESIGN OF THE MEDICAL SCIENTIFIC ADVISORY BOARD OF THE MYASTHENIA GRAVIS FOUNDATION OF AMERICA in 2012 for clinical trials to determine treatment response. The MGC serves to quantitatively determine the PIS definitions of Improvement and Worsening since a 3-point change is considered clinically meaningful. The reason for selecting MGC over QMG is that MGC is “weighted for clinical significance and incorporates patient-reported outcomes”. However, prospective studies comparing the performance of MGC to that of QMG in detection of improvement and worsening are lacking. The MGC can be administered by a trained physician, research coordinator or clinical evaluator. 

 

Download the MG-Composite here.

References:

Sadjadi R, Conaway M, Cutter G, Sanders DB, Burns TM; MG Composite MG-QOL15 Study Group. Psychometric evaluation of the myasthenia gravis composite using Rasch analysis. Muscle Nerve. 2012;45(6):820-825. 
Benatar M, Sanders DB, Burns TM, Cutter GR, Guptill JT, Baggi F, Kaminski HJ, Mantegazza R, Meriggioli MN, Quan J, Wolfe GI; Task Force on MG Study Design of the Medical Scientific Advisory Board of the Myasthenia Gravis Foundation of America. Recommendations for myasthenia gravis clinical trials. Muscle Nerve. 2012;45(6):909-917.

 

Clinical Research Standards (PDF)

In 2000, a task force of the MGFA Medical/Scientific Advisory Board published a paper proposing classification systems for the severity of MG and definitions of response to therapy in MG to achieve uniformity in recording and reporting clinical trials and outcomes research.

For an updated recommendation for myasthenia gravis clinical trials, please see the following document.

 

The Neurololgist

January 2002: Myasthenia Gravis
Michael W. Nicolle, M.D. FRCPC D. Phil.

 

Emedicine

http://www.emedicine.com/neuro/topic232.htm
A summary of diagnosis and treatment methods 
eMedicine is the most authoritative and accessible point of care medical reference available to physicians and other health care professionals on the Internet. The evidence-based content, updated regularly by more than 8,000 attributed physician or health care provider authors and editors, provides the latest practice guidelines in 38 clinical areas.

 

MEDLINEplus

http://www.nlm.nih.gov/medlineplus/
from the National Library of Medicine of the National Institutes of Health 
MedlinePlus is the National Institutes of Health's Web site for patients and their families and friends. Produced by the National Library of Medicine, it provides relevant information about diseases, conditions, and wellness issues in language you can understand.

 

 

A World Without MG