Abstract Details

Title A Two-Year Retrospective Chart Review to Evaluate Demographics of Amyotrophic Lateral Sclerosis Patients Attending a Multidisciplinary Clinic

Topic Neuromuscular and Clinical Neurophysiology (EMG)

Presentation(s) P8 - Poster Session 8 (8:00 AM-9:00 AM)

Poster/Presentation
Number 1-006

Objective To assess the demographic characteristics and the delivery of health care to amyotrophic lateral sclerosis (ALS) patients in the USC ALS Multidisciplinary Clinic.

Background ALS is a progressive neurodegenerative disease characterized by upper motor neuron (UMN) and lower motor neuron (LMN) signs, with heterogeneous age of onset, symptoms, and progression. Multidisciplinary clinic referral is recommended to optimize health care delivery. There are currently only two medications that are FDA approved to slow ALS progression.

Design/Methods A retrospective chart review of 82 patients attending our multidisciplinary clinic was conducted.

Results In our multidisciplinary clinic, 60% (n=49) of patients were male, 67% (n=55) of patients presented with spinal-onset ALS, 28% (n=23) had bulbar-onset, and 5% (n=4) experienced bulbar and spinal symptom onset simultaneously. The mean and median initial ALS Functional Rating Scale-Revised (ALSFRS-R) scores were 36 and 38, respectively, with a range from 19 to 46. Average age at symptom onset was 60.2 years old. Average age of bulbar-onset was 65.7 versus 57.8 in spinal-onset (p=0.017). The median time from symptom onset to referral to our neuromuscular clinic was 18 months. Edaravone was prescribed to 56% (n=46) of patients, 63% (n=29) of whom started and maintained use of the drug. 73% (n=60) of patients were taking riluzole and 35% (n=29) were taking Nuedexta. 16% (n=13) of patients underwent percutaneous endoscopic gastrostomy (PEG) placement, which improved percent change in weight per month from –2.71% to 0.29% (p=0.026). Over the observed period, 12% (n=10) of the patients expired, 60% (n=6) of which had bulbar-onset ALS.

Conclusions More should be done to identify barriers that delay referral to specialist services and to educate community neurologists in our region. Multidisciplinary care improves patient quality of life and helps capture disease characteristics and progression. PEG placement reduces weight loss and should be pursued earlier.

Authors/Disclosures
PRESENTER	No disclosure on file
Leila Darki, MD, F�鶹��ýӳ�� (USC NeuroSciences)	Dr. Darki has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Trinity Partner. Dr. Darki has received personal compensation in the range of $0-$499 for serving as a Consultant for Guide point Global. Dr. Darki has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Global Access Meetings. Dr. Darki has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Amylyx . Dr. Darki has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Amylyx.
Lise Phan, MD (West Coast Neurology)	No disclosure on file
Said R. Beydoun, MD, F�鶹��ýӳ�� (University of Southern California Healthcare Consultation Center 2)	Dr. Beydoun has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Amgen. Dr. Beydoun has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Alexion. Dr. Beydoun has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Janssen. Dr. Beydoun has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for CSL. Dr. Beydoun has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for AstraZeneca. Dr. Beydoun has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Argenx. Dr. Beydoun has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for UCB. Dr. Beydoun has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Pfizer. Dr. Beydoun has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Takeda. Dr. Beydoun has received personal compensation in the range of $5,000-$9,999 for serving on a Speakers Bureau for Alnylam. Dr. Beydoun has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for Alexion. Dr. Beydoun has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for CSL. Dr. Beydoun has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for UCB. Dr. Beydoun has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for Takeda. Dr. Beydoun has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for AstraZeneca. Dr. Beydoun has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for Argenx. Dr. Beydoun has received personal compensation in the range of $5,000-$9,999 for serving on a Speakers Bureau for Janssen. The institution of Dr. Beydoun has received research support from Abcuro. The institution of Dr. Beydoun has received research support from Sean Healy & AMG Center for ALS. The institution of Dr. Beydoun has received research support from Regeneron. The institution of Dr. Beydoun has received research support from RemeGen. The institution of Dr. Beydoun has received research support from Sanofi. The institution of Dr. Beydoun has received research support from Novartis.

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