Myasthenie.com

Neurology. 2025 Apr 8;104(7_Supplement_1):3922. doi: 10.1212/WNL.0000000000211329. Epub 2025 Apr 7.

ABSTRACT

OBJECTIVE: Determine design requirements for a digital tool utilizing validated patient-reported outcomes (PROs) to improve symptom tracking and communication between patients with myasthenia gravis (MG) and healthcare practitioners (HCPs) in routine practice.

BACKGROUND: The fluctuating nature of MG symptoms creates challenges for disease management. Validated PROs are utilized in clinical research to assess symptom changes over time, but tracking in routine clinical practice could be improved.

DESIGN/METHODS: A literature review and preliminary interviews with patients with MG (n=3) and HCPs (n=4) were conducted to assess the current state of MG symptom tracking and identify opportunities for improvement. Structured workshops with HCPs (n=5) and validation interviews with patients (n=10) and HCPs (n=9) were held to design a novel digital tool and understand factors influencing adoption. Participating patients and HCPs were US-based. Transcripts were analyzed for themes regarding challenges, preferred solutions, and benefits and applications of the proposed digital tool.

RESULTS: Key design requirements included a two-sided digital solution where patients input validated PROs between clinic visits, and HCPs visualize longitudinal data on demand via integration with electronic health records. The MG-Activities of Daily Living score was the preferred primary visual, with ability to overlay subscores and other contextual data (ie, Patient Acceptability of Symptom State, Neuro-QoL Fatigue, hospitalizations, and medications). Free text patient diary entries with artificial intelligence-generated summaries for HCPs were desired for additional contextualization and personalization. Factors influencing patient adoption included HCP use and potential for one central MG management tool. HCPs noted streamlined visualizations enabling quick data synthesis to support treatment decisions and features to simplify insurance prior authorization/reauthorization would facilitate adoption.

CONCLUSIONS: Patients and HCPs agreed the proposed solution would enhance clinical care by improving MG symptom tracking and ultimately treatment decisions. These results support continued development of the digital tool and studies investigating clinical utility. Disclaimer: Abstracts were not reviewed by Neurology® and do not reflect the views of Neurology® editors or staff. Disclosure: Dr. muppidi has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Alexion. Dr. muppidi has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for argenx. Dr. muppidi has received personal compensation in the range of $500-$4,999 for serving as a Consultant for UCB/Ra Pharma. Dr. muppidi has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Horizont Pharma. Dr. muppidi has received publishing royalties from a publication relating to health care. Dr. Alpers has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Argenx. Dr. Alpers has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Alexion. Dr. Alpers 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. Alpers has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for Argenx. Dr. Alpers has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for Alexion. Dr. Alpers has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for UCB. Dr. Anderson has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Janssen/Johnson&Johnson. Dr. Anderson has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Alexion. Dr. Silvestri has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for argenx. Dr. Silvestri has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Regeneron. Dr. Silvestri has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Alexion. Dr. Silvestri 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. Silvestri has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Immunovant. Dr. Silvestri has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Amgen. Dr. Silvestri has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for argenx. Dr. Silvestri has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Alexion. The institution of an immediate family member of Dr. Silvestri has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for UCB. Dr. Silvestri has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Takeda. Dr. Silvestri has received publishing royalties from a publication relating to health care. Dr. Streicher has nothing to disclose. Dr. Pandurangadu has received personal compensation for serving as an employee of ZS Associates. Mr. Jayaraman has received personal compensation for serving as an employee of ZS Associates. Mr. Gupta has received personal compensation for serving as an employee of ZS Associates Inc.. Dr. Campbell has received personal compensation for serving as an employee of Johnson and Johnson. Dr. Chaudhry has received personal compensation for serving as an employee of Johnson & Johnson. Dr. Chaudhry has received personal compensation for serving as an employee of Takeda Pharmaceuticals.

PMID:40194407 | DOI:10.1212/WNL.0000000000211329


Source: https://pubmed.ncbi.nlm.nih.gov/4019440 ... t9+e462414