Â鶹´«Ã½Ó³»­

Â鶹´«Ã½Ó³»­

Explore the latest content from across our publications
Join The Â鶹´«Ã½Ó³»­

Log In

Forgot Password?
Create New Account

Loading... please wait

Abstract Details

Assessment of current best-practices, across neurology and SMA care centers in the US, to triage and expedite incoming referrals for the evaluation of Spinal Muscular Atrophy
Child Neurology and Developmental Neurology
Child Neurology and Developmental Neurology Posters (7:00 AM-5:00 PM)
071
The purpose of the study was to evaluate appointment wait time for initial referral, and current best practices to expedite and triage incoming referrals for evaluation, if spinal muscular atrophy (SMA) is suspected.
SMA is an autosomal recessive neuromuscular disease characterized by progressive muscle weakness and atrophy. Clinical trial data suggests early treatment is critical to modifying disease progression and is expected to alter phenotype. Thus, early diagnosis is crucial.  
Cure SMA distributed the survey from July 9, 2020 through August 31, 2020 via Medscape to neurologists, child neurologists, and neuromuscular specialists; 279 responses were obtained. Cure SMA also distributed the survey to providers affiliated with top SMA care centers yielding 26 additional completes.

Within the general cohort, average wait time for 78% of referrals evaluating ‘hypotonia & motor delays’ in infants, and ‘suspected SMA’ is 0 to 4 weeks. 62% of referrals evaluating ‘hypotonia & motor delay’ and 85% of those for ‘suspected SMA’ are seen within 2 weeks at SMA care centers. 85% of the general cohort and 100% of SMA care centers triage incoming referrals. When evaluating triage methods, SMA care centers utilize ‘Centralized Call Center Staff’ (46%) and ‘Nurse Coordinators’ (38%) to prioritize appointments if key emergency words are included within the referral. 58% of physicians at SMA care centers and 44% within the general cohort review incoming referrals and expedite urgent cases. Amongst the general cohort there was a 98.2% chance that infants with hypotonia and motor delay will have 0 to 2 week vs 1 to 2 month wait time when respondent reviewed referrals.
There was variance in appointment wait time and triage methods utilized, especially amongst the general cohort. Guidelines supporting the triage of referrals specific to hypotonia and motor delays may relieve wait time and support early diagnosis and treatment of SMA.
Authors/Disclosures
Mary Curry, ND
PRESENTER 		Mary Curry has received personal compensation for serving as an employee of Cure SMA.
Rosangel E. Cruz, MA Ms. Cruz has nothing to disclose.
Lisa Belter Lisa Belter has received personal compensation for serving as an employee of Cure SMA.
Mary K. Schroth, MD Dr. Schroth has received personal compensation for serving as an employee of Cure SMA. The institution of Dr. Schroth has received research support from Biogen.
No disclosure on file