Dataset Information

Multiple Sclerosis Performance Test: Technical Development and Usability.

ABSTRACT: INTRODUCTION:In the clinic, the assessment of patients with multiple sclerosis (MS) is typically qualitative and non-standardized. OBJECTIVES:To describe the MS Performance Test (MSPT), an iPad Air® 2 (Apple, Cupertino, CA, USA)-based neurological assessment platform allowing patients to input relevant information without the aid of a medical technician, creating a longitudinal, clinically meaningful, digital medical record. To report results from human factor (HF) and usability studies, and the initial large-scale implementation in a practice setting. METHODS:The HF study examined use-error patterns in small groups of MS patients and healthy controls (n?=?14), the usability study assessed the effectiveness of patient interaction with the tool by patients with a range of MS disability (n?=?60) in a clinical setting, and the implementation study deployed the MSPT across a diverse population of patients (n?=?1000) in a large MS center for routine clinical care. RESULTS:MSPT assessments were completed by all users in the HF study; minor changes to design were recommended. In the usability study, 73% of patients with MS completed the MSPT, with an average administration time of 32 min; 85% described their experience with the tool as satisfactory. In the initial implementation for routine care, 84% of patients with MS completed the MSPT, with an average administration time of 28 min. CONCLUSION:Patients with MS with varying disability levels completed the MSPT with minimal or no supervision, resulting in comprehensive, efficient, standardized, quantitative, clinically meaningful data collection as part of routine medical care, thus allowing for large-scale, real-world evidence generation. FUNDING:Biogen. TRIAL REGISTRATION:NCT02664324.

SUBMITTER: Rhodes JK

PROVIDER: S-EPMC6824297 | biostudies-literature | 2019 Jul

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Multiple Sclerosis Performance Test: Technical Development and Usability.

Rhodes Jane K JK Schindler David D Rao Stephen M SM Venegas Fernando F Bruzik Efrosini T ET Gabel Wendy W Williams James R JR Phillips Glenn A GA Mullen Colleen C CC Freiburger Jaime L JL Mourany Lyla L Reece Christine C Miller Deborah M DM Bethoux Francois F Bermel Robert A RA Krupp Lauren B LB Mowry Ellen M EM Alberts Jay J Rudick Richard A RA

Advances in therapy 20190503 7

<h4>Introduction</h4>In the clinic, the assessment of patients with multiple sclerosis (MS) is typically qualitative and non-standardized.<h4>Objectives</h4>To describe the MS Performance Test (MSPT), an iPad Air<sup>®</sup> 2 (Apple, Cupertino, CA, USA)-based neurological assessment platform allowing patients to input relevant information without the aid of a medical technician, creating a longitudinal, clinically meaningful, digital medical record. To report results from human factor (HF) and ...[more]

PMID: 31054035

Similar Datasets

Project description:BackgroundMultiple sclerosis (MS) patients often struggle with treatment decisions, in part due to the increasing number of approved disease modifying therapies, each with different characteristics, and also since physicians can struggle to identify which of these characteristics matter most to each individual patient. Decision uncertainty can contribute to late treatment initiation and treatment non-adherence-causes of 'undertreatment' in MS. An interactive online patient decision aid that informs patients of their options, considers their individual preferences and goals, and facilitates conversations with their physicians, could improve how patients with relapsing forms of MS make evidence-based treatment decisions.ObjectiveTo develop and evaluate a prototype patient decision aid (PtDA) for first-line disease modifying therapies for relapsing-remitting multiple sclerosis.MethodsInformed by previous studies and International Patient Decision Aid Standards guidelines, a prototype PtDA was developed for patients with relapsing multiple sclerosis considering first line treatment. Patients with relapsing multiple sclerosis were recruited from the University of British Columbia's Multiple Sclerosis Clinic to participate in either an online survey or a focus group. Online survey participants completed the PtDA, followed by measures of acceptability, usability, and preparedness for decision-making, and provided general feedback. Focus group participants assessed usability of the revised PtDA. The analysis of qualitative and quantitative data led to improvements of the PtDA prototype.ResultsThe prototype PtDA received high ratings for acceptability and usability, and after its use, participants reported high-levels of preparedness for decision-making. Analysis of all qualitative data identified three key themes: the need for credible information; the usefulness of the PtDA; and the importance of normalizing and sharing experiences. Nine content areas were identified for revision. Overall, participants found the PtDA to be a valuable tool for facilitating treatment decisions.ConclusionsThis mixed methods study has led to the development of a PtDA that can support patients with RRMS as they make treatment decisions. Future studies will assess the feasibility of implementation and the impact of the PtDA on both the timely treatment initiation and longer-term adherence.

Project description:BackgroundPeople with multiple sclerosis face varying levels of disability and symptoms, thus requiring highly trained therapists and/or exercise trainers to design personalized exercise programs. However, for people living in geographically isolated communities, access to such trained professionals can be challenging due to a number of barriers associated with cost, access to transportation, and travel distance. Generic mobile health exercise apps often fall short of what people with multiple sclerosis need to become physically active (ie, exercise content that has been adapted to accommodate a wide range of functional limitations).ObjectiveThis usability study describes the development process of the TEAMS (Tele-Exercise and Multiple Sclerosis) app, which is being used by people with multiple sclerosis in a large randomized controlled trial to engage in home-based telerehabilitation.MethodsTwenty-one participants with disabilities (10 people with multiple sclerosis) were involved in the double iterative design, which included the simultaneous development of the app features and exercise content (exercise videos and articles). Framed within a user-centered design approach, the development process included 2 stages: ground-level creation (focus group followed by early stage evaluations and developments), and proof of concept through 2 usability tests. Usability (effectiveness, usefulness, and satisfaction) was evaluated using a mixed-methods approach.ResultsDuring testing of the app's effectiveness, the second usability test resulted in an average of 1 problem per participant, a decrease of 53% compared to the initial usability test. Five themes were constructed from the qualitative data that related to app usefulness and satisfaction, namely: high perceived confidence for app usability, positive perceptions of exercise videos, viable exercise option at home, orientation and familiarity required for successful participation, and app issues. Participants acknowledged that the final app was ready to be delivered to the public after minor revisions. After including these revisions, the project team released the final app that is being used in the randomized controlled trial.ConclusionsA multi-level user-centered development process resulted in the development of an inclusive exercise program for people with multiple sclerosis operated through an easy-to-use app. The promotion of exercise through self-regulated mHealth programs requires a stakeholder-driven approach to app development. This ensures that app and content match the preferences and functional abilities of the end user (ie, people with varying levels of multiple sclerosis).

Project description:The most complex interactions between human beings occur through speech, and often in the presence of background noise. Understanding speech in noisy environments requires the integrity of highly integrated and widespread auditory networks likely to be impacted by multiple sclerosis (MS) related neurogenic injury. Despite the impact auditory communication has on a person's ability to navigate the world, build relationships, and maintain employability; studies of speech-in-noise (SiN) perception in people with MS (pwMS) have been minimal to date. Thus, this paper presents a dataset related to the acquisition of pure-tone thresholds, SiN performance and questionnaire responses in age-matched controls and pwMS. Bilateral pure-tone hearing thresholds were obtained at frequencies of 250 hertz (Hz), 500 Hz, 750 Hz, 1000 Hz, 1500 Hz, 2000 Hz, 4000 Hz, 6000 Hz and 8000 Hz, and hearing thresholds were defined as the lowest level at which the tone was perceived 50% of the time. Thresholds at 500 Hz, 1000 Hz, 2000 Hz and 4000 Hz were used to calculate the four-tone average for each participant, and only those with a bilateral four tone average of ≤ 25 dB HL were included in the analysis. To investigate SiN performance in pwMS, pre-recorded Bamford-Kowal-Bench (BKB) sentences were presented binaurally through headphones at five signal-to-noise ratios (SNR) in two noise conditions: speech-weighted noise and multi-talker babble. Participants were required to verbally repeat each sentence they had just heard; or indicate their inability to do so. A 33-item questionnaire, based on validated inventories for specific adult clinical populations with abnormal auditory processing, was used to evaluate auditory processing in daily life for pwMS. For analysis, pwMS were grouped according to their Expanded Disability Status Scale (EDSS) score as rated by a neurologist. PwMS with EDSS scores ≤ 1.5 were classified as 'mild' (n = 20); between 2 and 4.5 as 'moderate' (n = 16) and between 5 and 7 as 'advanced' (n = 10) and were compared to neurologically healthy controls (n = 38). The outcomes of the SiN task conducted in pwMS can be found in Iva et al., (2021). The present data has important implications for the timing and delivery of preparatory education to patients, family, and caregivers about communication abilities in pwMS. This dataset will also be valuable for the reuse/reanalysis required for future investigations into the clinical utility of SiN tasks to monitor disease progression.

Project description:BackgroundMultiple sclerosis (MS) is a chronic, neurodegenerative disease that causes a range of motor, sensory, and cognitive symptoms. Due to these symptoms, people with MS are at a high risk for falls, fall-related injuries, and reductions in quality of life. There is no cure for MS, and managing symptoms and disease progression is important to maintain a high quality of life. Mobile health (mHealth) apps are commonly used by people with MS to help manage their health. However, there are limited health apps for people with MS designed to evaluate fall risk. A fall risk app can increase access to fall risk assessments and improve self-management. When designing mHealth apps, a user-centered approach is critical for improving use and adoption.ObjectiveThe purpose of this study is to undergo a user-centered approach to test and refine the usability of the app through an iterative design process.MethodsThe fall risk app Steady-MS is an extension of Steady, a fall risk app for older adults. Steady-MS consists of 2 components: a 25-item questionnaire about demographics and MS symptoms and 5 standing balance tasks. Data from the questionnaire and balance tasks were inputted into an algorithm to compute a fall risk score. Two iterations of semistructured interviews (n=5 participants per iteration) were performed to evaluate usability. People with MS used Steady-MS on a smartphone, thinking out loud. Interviews were recorded, transcribed, and developed into codes and themes. People with MS also completed the System Usability Scale.ResultsA total of 3 themes were identified: intuitive navigation, efficiency of use, and perceived value. Overall, the participants found Steady-MS efficient to use and useful to learn their fall risk score. There were challenges related to cognitive overload during the balance tasks. Modifications were made, and after the second iteration, people with MS reported that the app was intuitive and efficient. Average System Usability Scale scores were 95.5 in both iterations, representing excellent usability.ConclusionsSteady-MS is the first mHealth app for people with MS to assess their overall risk of falling and is usable by a subset of people with MS. People with MS found Steady-MS to be usable and useful for understanding their risk of falling. When developing future mHealth apps for people with MS, it is important to prevent cognitive overload through simple and clear instructions and present scores that are understood and interpreted correctly through visuals and text. These findings underscore the importance of user-centered design and provide a foundation for the future development of tools to assess and prevent scalable falls for people with MS. Future steps include understanding the validity of the fall risk algorithm and evaluating the clinical utility of the app.

Dataset Information

Multiple Sclerosis Performance Test: Technical Development and Usability.

Publications

Multiple Sclerosis Performance Test: Technical Development and Usability.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets