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Abstract Details

Preparing for a New Era in SMA Care with Disease Modifying Therapies: The Role of Tethered, Aligned, Patient/Caregiver and Clinician 好色先生
好色先生, Research, and Methodology
P7 - Poster Session 7 (8:00 AM-9:00 AM)
7-006

To assess the influence of aligned education for clinicians (HCPs) and patients-caregivers (P/Cs) on knowledge and competence gaps and self-reporting behaviors related to the evolving needs of patients with spinal muscular atrophy (SMA), including the obstetric and gynecologic needs of women with SMA.

With available disease-modifying therapies (DMTs), the natural history of SMA is changing. Treatment expectations of HCPs’ and P/Cs’ are evolving, along with the ongoing need for multidisciplinary care.

One 60-min CME activity for HCPs and four 15-min modules for P/Cs were launched live-online on 7/21/21 and will remain on-demand for 1 year. Test questions were administered pre-, immediate post-, and 2 months post-activity. Responses from learner polling and surveys were analyzed for engagement, lessons learned, and continuing gaps. McNemar tests compared paired responses (pre/post & pre/2 mos) with Cohen’s d for effect size.

As of 9/23/21, 165 HCPs and 135 P/Cs attended the activities. Across tested topics, HCPs’ baseline knowledge of perinatal care was lowest. Post activity, competence and knowledge significantly improved for all questions (52.02% pre vs 72.63% post). ~66% of HCPs reported a positive impact on clinical practice related to counseling for prenatal care and multi-disciplinary monitoring. Post education, ~50% of P/Cs remained uncertain of the place of prenatal screening and of expected outcomes related to pregnancy when a mother has SMA. P/Cs showed positive behavior changes related to the nutritional and rehabilitation needs of a child with SMA and for screening siblings for SMA.

Data support the positive impact of live-online HCP and P/C education to prepare HCPs and P/Cs for the evolving care needs of children and young adults with SMA who receive DMTs. However, findings also highlight the need for additional education for both groups regarding the role of prenatal screening and perinatal care for women with SMA.

Authors/Disclosures
Carole Drexel (PlatformQ LLC)
PRESENTER
Carole Drexel has nothing to disclose.
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
Julie A. Parsons, MD Dr. Parsons has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Biogen. Dr. Parsons has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Pfizer. Dr. Parsons 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. Parsons has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Ultragenex. The institution of Dr. Parsons has received research support from AveXis. The institution of Dr. Parsons has received research support from Biogen. The institution of Dr. Parsons has received research support from Scholar Rock. The institution of Dr. Parsons has received research support from Biohaven. The institution of Dr. Parsons has received research support from PTC Therapeutics. The institution of Dr. Parsons has received research support from Novartis.