Correlation and differences of patient-reported outcomes vs. Likert-Rating of MS symptoms in a real-world cohort using a digital patient app

Abstract

Background Multiple Sclerosis (MS) is a chronic and progressive neurological autoimmune disease currently affecting 250,000 individuals in Germany. Patients suffering from the disease can be severely impaired in their day-to-day activities. BRISA is a digital app specifically designed to help MS patients monitor their disease by regularly tracking symptoms. Lengthy and time-consuming questionnaires for patient-reported outcomes (PRO) are the standard method to assess the patients’ current condition. Here, we examine whether simplified versions of these questionnaires can provide comparable information regarding individual symptom presentations in BRISA users. Methods 828 users were included in the analysis. Patients who provided onboarding information and answered at least one questionnaire and the corresponding simplified smiley symptoms assessment were included. Correlation of questionnaire and symptom scores was calculated using Pearson's correlation. Results Our analysis cohort predominantly consisted of female, 26–55-year-olds. Relapsing-remitting MS (RRMS) was the most common MS type recorded. Most patients were diagnosed 2–5 years ago. Questionnaires regarding fatigue and vision impairment were among the most answered, those regarding bowel movement and sexual satisfaction received fewest responses. Overall, the scores from questionnaires and symptoms correlated positively. Scoring correlation could also be shown across the subgroups divided by gender, age groups, type of MS, and time since diagnosis of the disease. Conclusion Scores recorded from traditional PRO questionnaires can be reflected more easily as a trend in a simplified scale using smileys. Nevertheless, traditional questionnaires are needed to also maintain a more objective assessment. In conclusion, the patient will benefit most from an adaptive combination of regular traditional PRO questionnaire assessments and simplified symptom recording.

Management of multiple sclerosis fatigue in the digital age: from assessment to treatment

“…Digital health tools must encounter the patient's need for a quick and steady evaluation method, which leaves no room for interpretation or ambiguity (especially for people with cognitive, linguistic, or visual limitations). Mountford et al ( 2023 ) were able to correlate the daily reported disturbances with the PROs and a rather satisfactory compliance rate, even in the elder patient group.…”

“…Even more interestingly, they can rate their disturbances on a scale from 0 to 4 based on a smiley-face scale (where the 0-smiley represents a poorer state and the 4-smiley a better condition). Apart from that, standardized medical questionnaires (like the Modified Fatigue Impact Scale) are required to be filled out every 2 weeks (Fisk et al, 1994a ; BRISA, 2022 ; Mountford et al, 2023 ). Although the PROs are still the state-of-the-art method to collect data on the symptoms, this digital solution provides a more immediate and intuitive way to communicate one's symptoms, without having to spend long every day on a retrospective questionnaire.…”

Fatigue: Physiology and Pathology

“…Even more interestingly, they can rate their disturbances on a scale from 0 to 4 based on a smiley-face scale (where the 0-smiley represents a poorer state and the 4-smiley a better condition). Apart from that, standardized medical questionnaires (like the Modified Fatigue Impact Scale) are required to be filled out every 2 weeks (Fisk et al, 1994a;BRISA, 2022;Mountford et al, 2023). Although the PROs are still the state-of-the-art method to collect data on the symptoms, this digital solution provides a more immediate and intuitive way to communicate one's symptoms, without having to spend long every day on a retrospective questionnaire.…”

Understanding the Symptoms and Impacts Experienced by People with Relapsing–Remitting MS: A Qualitative Investigation Using Semi-Structured Interviews

“…Improving the assessment of symptoms and functional limitations experienced by PwMS prior to clinical confirmation of disease progression or increased disease activity may help drive innovation in earlier management of MS symptoms and greater understanding of progression independent of relapse activity. Self-reported symptoms captured daily using a digital app were found to correlate with scores recorded using traditional patient-reported outcomes (PROs) [ 18 ]. By tracking symptoms and medication use in this way, PwMS may be able to monitor both their disease management and progression more accurately and provide more detailed and valuable information to their physician, supporting treatment strategy assessments [ 18 ].…”

“…Self-reported symptoms captured daily using a digital app were found to correlate with scores recorded using traditional patient-reported outcomes (PROs) [ 18 ]. By tracking symptoms and medication use in this way, PwMS may be able to monitor both their disease management and progression more accurately and provide more detailed and valuable information to their physician, supporting treatment strategy assessments [ 18 ].…”