Sutter Health
Sutter Health, Center for Health Systems Research

Author Of 2 Presentations

Patient-Reported Outcomes and Quality of Life Poster Presentation

P1005 - An electronic, unsupervised Patient Reported Expanded Disability Status Scale for Multiple Sclerosis (ID 1921)

Speakers
Presentation Number
P1005
Presentation Topic
Patient-Reported Outcomes and Quality of Life

Abstract

Background

In persons with multiple sclerosis (MS), the Expanded Disability Status Scale (EDSS) is the criterion standard for assessing disability, but its in-person nature constrains patient participation in research and clinical assessments.

Objectives

To develop and validate a scalable, electronic, unsupervised patient-reported EDSS (ePR-EDSS) that would capture MS-related disability across the spectrum of severity.

Methods

We enrolled 136 adult MS patients, split into a preliminary testing Cohort 1 (n=50), and a validation Cohort 2 (n=86), which was evenly distributed across EDSS groups. Each patient completed an ePR-EDSS either immediately before or after a MS clinician’s Neurostatus EDSS (NS-EDSS) evaluation. The final ePR-EDSS version includes 23 questions, takes between 7-12 minutes to complete (based on time measured for Cohort 2 participants), and can be accessed at https://openmsbioscreen.ucsf.edu/predss/about.

Results

In Cohort 2, mean age was 50.6 years (range 26-80) and median EDSS was 3.5 (IQR 1.5, 5.5). The ePR-EDSS and EDSS agreed within 1-point for 86% of examinations; kappa for agreement within 1-point was 0.85 (p<0.001). The correlation coefficient between the two measures was 0.91 (<0.001). For individual functional systems, complete agreement was highest for the brainstem score (55.8%) and lowest for the sensory score (31.4%). In sensitivity analyses adjusted for NS-EDSS, the absolute difference between ePR-EDSS and NS-EDSS was not significantly related to age, sex, disease duration, years of education, or the timepoint at which the ePR-EDSS tool was assessed (before/after neurological exam).

Conclusions

The ePR-EDSS is unique compared to other published tools - it can be accessed and performed by the patient without any supervision, is freely and openly available, has built-in logic to calculate functional system and total scores, and is validated over a wide NS-EDSS range. It demonstrated high correlation with NS-EDSS, with good agreement even at lower EDSS levels. For clinical care, the ePR-EDSS could enable the longitudinal monitoring of a patient’s disability. For research, it provides a valid and rapid measure across the entire spectrum of disability and permits broader participation with fewer in-person assessments.

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Patient-Reported Outcomes and Quality of Life Poster Presentation

P1023 - Early experience engaging patients in the use of a mobile application for tracking multiple sclerosis. (ID 1522)

Speakers
Presentation Number
P1023
Presentation Topic
Patient-Reported Outcomes and Quality of Life

Abstract

Background

When patients with multiple sclerosis (MS) are seen only 2-3 times per year, the in-clinic interview and patient recall are the main means of capturing between-visit information on MS disease status and treatment status. Recall error and limited clinical time can diminish the quality of these data. Mobile applications have the potential to fill in the gaps with structured, quality and timely information to inform the clinical encounter. Few mobile apps have shown wide adoption. It is unclear whether patients embrace these solutions and if they provide useful data to clinicians. This pilot test assessed the adoption and usability of an MS-focused mobile app called Floodlight Open (FLO).

Objectives

Our objective was to understand the barriers and facilitators to introducing patients to the app in clinical practice, use over time, and patient and clinicians’ experience.

Methods

We piloted FLO in three neurology practices. Enrollment relied on a clinician-mediated model in which a neurologist introduced an MS patient to a researcher, who enrolled them in the study and encouraged use for at least 30 days. We modified the enrollment process mid-way to demonstrate the assessments in the app. Usage data were complemented by patients and clinician interviews.

Results

Initially we recruited 50 patients, 46% of whom used the app. Female users were 78%. The average use was 30 days over the first 60 days from enrollment; 30% of patients contributed 30+ days of data. Patients over 35 years of age contributed the most and the 25-34 age group contributed the least data. After the protocol change, 46 patients were recruited, 48% of whom used the app. 86% of users were female. The average use was 31 days; 23% patients contributed 30+ days of data. Patients in the 45-64 age group were most likely to be persistent users and the 35-44 age group were the least persistent user. Qualitative results indicate that: 1) patient participation is strongly driven by willingness to help research, 2) patients perceive a trade-off between effort to use the app and its value in an encounter, 3) physician use of the data motivates patient app use, 4) reminders are important to ongoing use.

Conclusions

Physician’s endorsement is influential and helps initial uptake, as does a patient’s desire to participate in research. Routine use of data by physicians in the encounter is important to motivate patients to use a mobile app longer term and outside of a research context.

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Presenter Of 1 Presentation

Patient-Reported Outcomes and Quality of Life Poster Presentation

P1023 - Early experience engaging patients in the use of a mobile application for tracking multiple sclerosis. (ID 1522)

Speakers
Presentation Number
P1023
Presentation Topic
Patient-Reported Outcomes and Quality of Life

Abstract

Background

When patients with multiple sclerosis (MS) are seen only 2-3 times per year, the in-clinic interview and patient recall are the main means of capturing between-visit information on MS disease status and treatment status. Recall error and limited clinical time can diminish the quality of these data. Mobile applications have the potential to fill in the gaps with structured, quality and timely information to inform the clinical encounter. Few mobile apps have shown wide adoption. It is unclear whether patients embrace these solutions and if they provide useful data to clinicians. This pilot test assessed the adoption and usability of an MS-focused mobile app called Floodlight Open (FLO).

Objectives

Our objective was to understand the barriers and facilitators to introducing patients to the app in clinical practice, use over time, and patient and clinicians’ experience.

Methods

We piloted FLO in three neurology practices. Enrollment relied on a clinician-mediated model in which a neurologist introduced an MS patient to a researcher, who enrolled them in the study and encouraged use for at least 30 days. We modified the enrollment process mid-way to demonstrate the assessments in the app. Usage data were complemented by patients and clinician interviews.

Results

Initially we recruited 50 patients, 46% of whom used the app. Female users were 78%. The average use was 30 days over the first 60 days from enrollment; 30% of patients contributed 30+ days of data. Patients over 35 years of age contributed the most and the 25-34 age group contributed the least data. After the protocol change, 46 patients were recruited, 48% of whom used the app. 86% of users were female. The average use was 31 days; 23% patients contributed 30+ days of data. Patients in the 45-64 age group were most likely to be persistent users and the 35-44 age group were the least persistent user. Qualitative results indicate that: 1) patient participation is strongly driven by willingness to help research, 2) patients perceive a trade-off between effort to use the app and its value in an encounter, 3) physician use of the data motivates patient app use, 4) reminders are important to ongoing use.

Conclusions

Physician’s endorsement is influential and helps initial uptake, as does a patient’s desire to participate in research. Routine use of data by physicians in the encounter is important to motivate patients to use a mobile app longer term and outside of a research context.

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