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Abstract Details

Initial Development of the Myasthenia Gravis-Health Index (MG-HI): Measuring the Most Prevalent and Impactful Symptoms Identified in Myasthenia Gravis
Neuromuscular and Clinical Neurophysiology (EMG)
P10 - Poster Session 10 (11:45 AM-12:45 PM)
11-013
In preparation for future clinical trials, it is essential to understand which symptoms affect the disease burden of individuals with MG and to develop a valid outcome measure to monitor these symptoms. 
To determine the prevalence and average impact of symptoms and symptomatic themes experienced by adults with myasthenia gravis (MG) and to use this information to develop a regulatory-grade outcome measure for this population.
We conducted semi-structured qualitative interviews with individuals with MG to identify the potential symptoms of importance pertaining to their disease burden. We then performed a national cross-sectional study of MG patients to determine the prevalence and relative importance of symptoms identified during the initial qualitative interviews. Symptom questions and symptomatic themes were then selected for the first version of the Myasthenia Gravis-Health Index (MG-HI) based upon their prevalence and importance to the patient population, their generalizability, and their likely ability to respond to therapeutic intervention. Factor analysis was utilized to group symptom questions into subscales of MG health. 
Fifteen individuals with MG participated in the initial qualitative interviews and provided 1,872 quotes regarding the symptomatic burden of MG. Two-hundred and twenty-two participants completed a cross-sectional survey to determine the prevalence and relative importance of the most relevant symptoms identified through interviews. The first version of the MG-HI was generated and is composed of 14 subscales with optimal internal consistency and relevance to patients. 
The MG-HI has extensive content and construct validity and is a viable tool to measure disease burden during longitudinal studies. Ongoing work will evaluate the usability, reliability, and known groups validity of the MG-HI in preparation for use in future studies.
Authors/Disclosures
Charlotte Engebrecht (University of Rochester Center for Health + Technology)
PRESENTER
No disclosure on file
Spencer Rosero (University of Rochester, Center for Health and Technology) No disclosure on file
Shaweta Khosa, MD Dr. Khosa has nothing to disclose.
Jennifer Weinstein No disclosure on file
Jamison Seabury (University of Rochester) No disclosure on file
Anika Varma (Center for Health + Technology, University of Rochester) No disclosure on file
Christina Shupe (Center for Health and Technology, University of Rochester) No disclosure on file
Charlotte Irwin No disclosure on file
Alicia Brocht (University of Rochester, Center for Health and Technology (CHeT)) No disclosure on file
Olimpia Carbunar, MD (University Of Miami) The institution of Dr. Carbunar has received research support from National Institute of Arthritis and Musculoskeletal and Skin Diseases.
Michael G. Benatar, MBChB, DPhil, FAAN (University of Miami) Dr. Benatar has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Biogen. The institution of Dr. Benatar has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Arrowhead. Dr. Benatar has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Alexion. Dr. Benatar has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Annexon. Dr. Benatar has received personal compensation in the range of $500-$4,999 for serving as a Consultant for UCB. Dr. Benatar has received personal compensation in the range of $500-$4,999 for serving as a Consultant for UniQure. Dr. Benatar has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Immunovant. Dr. Benatar has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Cartesian. Dr. Benatar has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Horizon. Dr. Benatar has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Janssen. Dr. Benatar has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Eli Lilly. Dr. Benatar has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Alector. Dr. Benatar has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Sanofi. Dr. Benatar has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Novartis. Dr. Benatar has received intellectual property interests from a discovery or technology relating to health care.
Chad R. Heatwole, MD, FAAN (University of Rochester Medical Center) Dr. Heatwole has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Virginia Commonwealth University. Dr. Heatwole has received personal compensation in the range of $50,000-$99,999 for serving as a Consultant for Legal Med. Dr. Heatwole has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Neurocrine. Dr. Heatwole has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Novartis. Dr. Heatwole has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Swan Bio. Dr. Heatwole has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Harmony. Dr. Heatwole has received personal compensation in the range of $0-$499 for serving as a Consultant for Iris. Dr. Heatwole has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Recursion. Dr. Heatwole has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Avidity Biosciences. Dr. Heatwole has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Lupin. Dr. Heatwole has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Neurocrine. Dr. Heatwole has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Sanofi. Dr. Heatwole has received personal compensation in the range of $500-$4,999 for serving as an Expert Witness for New York Central Mutual. Dr. Heatwole has received personal compensation in the range of $500-$4,999 for serving as an Expert Witness for Penn Prop and Gas. The institution of Dr. Heatwole has received research support from Department of Defense. The institution of Dr. Heatwole has received research support from Novartis. The institution of Dr. Heatwole has received research support from MJFF. The institution of Dr. Heatwole has received research support from FARA. The institution of Dr. Heatwole has received research support from NIH. The institution of Dr. Heatwole has received research support from University of Miami. The institution of Dr. Heatwole has received research support from MDA. Dr. Heatwole has received intellectual property interests from a discovery or technology relating to health care.