Development of a Patient-centric Botulinum Toxin Response Scale (BTRS) Through Qualitative Analysis
Alaina Tyler1, Vivikta Iyer1, Cole Zweber2, Deepak Gupta3, Lisa Deuel3, James Boyd3
1Neurological Sciences, 2Robert Larner College of Medicine, 3Binter Center for Parkinson's Disease & Movement Disorders, University of Vermont Medical Center
Objective:
To develop a comprehensive, patient-centric Botulinum Toxin Response Scale (BTRS) by integrating qualitative patient feedback into a dynamic, digital survey tool, and to demonstrate the revised BTRS.
Background:
Tracking botulinum toxin (BTX) efficacy for neurological disorders is hampered by recall bias between appointments. We have previously developed a prototype version of the BTRS previously and aimed to refine and expand it with patient interviews.
Design/Methods:
Following Institutional Review Board approval, this prospective observational study recruited 30 patients receiving BTX for spasticity, dystonia, tremor, or sialorrhea at the University of Vermont Medical Center. Data were collected via a baseline REDCap survey and semi-structured interviews exploring treatment experiences. Interview transcripts underwent a rigorous thematic analysis using a large language model to identify key patient priorities. These themes directly guided the iterative development of a new, interactive weekly survey tool. We created a web-based version of the revised BTRS.
Results:
Thematic analysis revealed five core themes: 1) the impact of BTX on quality of life, 2) significant logistical and financial barriers to care, 3) the "wear-off" effect of the treatment, 4) physical discomforts and side effects, and 5) the crucial role of the patient-provider relationship.
The digital survey was then modified based on the thematic analysis to address many unique conditions, with each featuring a specific questionnaire to capture the distinct goals and symptoms for that condition (e.g., tracking drooling for sialorrhea, range of motion for dystonia). The final tool also incorporates universal modules to monitor the treatment timeline, progress toward patient-defined functional goals, co-therapies, and overall satisfaction.
Conclusions:
The revised BTRS addresses patients’ perspectives, and its web-based implementation has the potential to serve as a patient reported outcome (PRO) measure via patient portals in electronic health record (EHR) systems.
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