Previously submitted to: Journal of Medical Internet Research (no longer under consideration since Oct 09, 2022)
Date Submitted: Apr 11, 2022
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
Your MS Questionnaire: A Patient-based Digital Tool to Monitor Symptoms of Multiple Sclerosis
ABSTRACT
Background:
The Your Multiple Sclerosis Questionnaire (YMSQ; www.yourms.com), a patient-completed tool, was co-developed with people living with MS (plwMS), patient advocacy groups, and clinicians to capture MS symptom changes and facilitate discussion between plwMS and clinicians.
Objective:
We describe the development of YMSQ and present the real-world usability testing results of YMSQ conducted across 7 countries.
Methods:
The YMSQ tool was developed in 4 stages to collect feedback from plwMS, patient organizations, and clinicians on content, format, and applicability. To assess its usability, 13 clinicians across 7 countries completed an online survey after using the tool with plwMS in a total of 261 consultations from September, 2020 to July, 2021.
Results:
The initial YMSQ version was based on findings from previous research developing MSProDiscuss™, a clinician-completed tool. Subsequently, insights from plwMS obtained during cognitive debriefing, patient councils and advisory boards led to changes including the addition of mood and sexual problems and the definition of relapse. All 13 clinicians completed the individual survey, whereas 10 clinicians completed the final survey. Clinicians “strongly agreed” or “agreed” that YMSQ was easy to use and understand (98.5%; 257/261 patient consultations). The clinicians were willing to use the tool again with the same patient (98.1%; 256/261 patient consultations). All clinicians who completed the final survey (100%; 10/10) reported that the use of the tool had a positive influence on their clinical practice, helped patients engage with their MS, facilitated discussion with patients, and complemented neurological assessment.
Conclusions:
YMSQ benefits both plwMS and clinicians by facilitating a structured discussion and engaging the plwMS to self-monitor and self-manage. YMSQ is compatible with telemedicine practice and integration of the tool into electronic health records would enable tracking of the disease evolution and individual monitoring of MS symptoms over time.
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