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Abstract Details

McGill University Single Item Quality-of-Life ( QoL ) Scale Compared with ALS Health-Related Quality-of-Life Likert Scales Including Breathing QoL Measurement
Neuromuscular and Clinical Neurophysiology (EMG)
P1 - Poster Session 1 (5:30 PM-6:30 PM)
12-024

Describe properties of an array of Likert-based health-related quality-of-life measurements compared with the McGill University Single Item Quality-of-Life ( QoL ) scale.

Currently ALS specific quality-of-life clinimetric scales do not have specific questions related to breathing.  Respiratory function is one of the main determinants of survival in ALS patients

ALS-MDA Care Center population in MDA ALS Outcomes Registry of 106 ALS patients at first diagnosis was evaluated with ALS Functional Rating Scale–Revised (ALSFRSR), McGill SIQoL, and additional health-related quality-of-life scales related to (1) energy, (2) getting about the community, (3) walking, (4) sit to stand, (5) toileting,(6) feeding, (7) swallowing, (8) communication (9) secretions, (10) breathing, (11) pain, (12) anxiety, (13) home care equipment provision.  Each scale was rated by the patient from 0–10 employing integral scores. 

McGill SIQoL is driven by anxiety QoL ( McGill Overall SIQoL  / Anxiety  Spearman rho = 0.739 [ 95 % CI = 0.526-0.865 ] P < 0.0001 ).  McGill SIQoL is driven by less by breathing  QoL  ( McGill SIQoL Overall / Breathing  Spearman    rho = 0.521 [ 95 % CI = 0.210-0.736 ] P = 0.0022 ).  McGill SIQoL is not driven by communication QoL ( McGill SIQoL Overall / Communication Spearman rho = 0.120 [ 95 % CI = -0.239 to 0.450 ] P = 0.5145 ). Breathing QoL is driven more by dyspnea self report than ALSFRSR orthopnea item score ( Breathing QoL / ALSFRSR orthopnea rho = 0.485 [ 95 % CI = 0.164-0.713] P = 0.0049) or ALSFRSR respiratory item score ( Breathing QoL / ALSFRSR respiratory  rho = 0.506 [ 95 % CI = 0.191-0.726 ] P = 0.0031).

Overall QoL measured by McGill SIQoL is impacted most by the anxiety QoL and feeding QoL domains with breathing QoL ranked sixth among the domains measured. Breathing QoL is impacted most by the  ALSFRSR dyspnea item score compared with the ALSFRSR orthopnea and respiratory item scores.

Authors/Disclosures
Benjamin R. Brooks, MD, FAAN (Clinical Trials Planning LLC)
PRESENTER
Dr. Brooks has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Mitsubishi Tanabe Pharma America. Dr. Brooks has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Medicinova. Dr. Brooks has received personal compensation in the range of $10,000-$49,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Biogen. Dr. Brooks has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for AB Science. Dr. Brooks has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Ionis. Dr. Brooks has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Mitsubishi Tanabe Pharma America. The institution of Dr. Brooks has received research support from Mitsubishi TanabePharma America. Dr. Brooks has received personal compensation in the range of $0-$499 for serving as a Member Annual Surveillance Committee CDC National ALS Registry with Center for Disease Control Agency Toxic Substances Disease Registry. Dr. Brooks has a non-compensated relationship as a Member ALS Quality Measures Subcommittee with 好色先生 that is relevant to AAN interests or activities.
Elena Bravver, MD No disclosure on file
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Navid Jalali, MD (Atrium Health) No disclosure on file
William B. Dawson, MD No disclosure on file
Urvi G. Desai, MD, FAAN (Dept of Neurology, CMC) Dr. Desai has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Alexion. Dr. Desai has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Biogen. Dr. Desai has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Takeda. Dr. Desai has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Argenx. Dr. Desai has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Fulcrum. Dr. Desai has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Catalyst. Dr. Desai has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for UCB. Dr. Desai has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Alexion. Dr. Desai has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Argenx.
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Mohammed S. Sanjak, PhD (Carolinas Healthcare System) No disclosure on file
Amber L. Ward (Carolinas Neuromuscular ALS/MDA Center) No disclosure on file
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