scholarly journals Technology-enabled assessments to enhance multiple sclerosis clinical care and research

2019 ◽  
Vol 10 (3) ◽  
pp. 222-231
Author(s):  
Gabrielle Macaron ◽  
Brandon P. Moss ◽  
Hong Li ◽  
Laura E. Baldassari ◽  
Stephen M. Rao ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Performance Test ◽  
Clinical Care ◽  
Capture Rate ◽  
Patient Reported Outcome Measures ◽  
Data Capture ◽  
Completion Rates ◽  
Mixed Effect ◽  
Low Contrast ◽  
Patient Reported

BackgroundComprehensive and efficient assessments are necessary for clinical care and research in chronic diseases. Our objective was to assess the implementation of a technology-enabled tool in MS practice.MethodWe analyzed prospectively collected longitudinal data from routine multiple sclerosis (MS) visits between September 2015 and May 2018. The MS Performance Test, comprising patient-reported outcome measures (PROMs) and neuroperformance tests (NPTs) self-administered using a tablet, was integrated into routine care. Descriptive statistics, Spearman correlations, and linear mixed-effect models were used to examine the implementation process and relationship between patient characteristics and completion of assessments.ResultsA total of 8022 follow-up visits from 4199 patients (median age 49.9 [40.2–58.8] years, 32.1% progressive course, and median disease duration 13.6 [5.9–22.3] years) were analyzed. By the end of integration, the tablet version of the Timed 25-Foot Walk was obtained in 89.0% of patients and the 9-Hole Peg Test in 94.8% compared with 74.2% and 64.3%, respectively before implementation. The greatest increase in data capture occurred in processing speed and low-contrast acuity assessments (0% prior vs 78.4% and 36.7%, respectively, following implementation). Four PROMs were administered in 41%–98% of patients compared with a single depression questionnaire with a previous capture rate of 70.6%. Completion rates and time required to complete each NPT improved with subsequent visits. Younger age and lower disability scores were associated with shorter completion time and higher completion rates.ConclusionsIntegration of technology-enabled data capture in routine clinical practice allows acquisition of comprehensive standardized data for use in patient care and clinical research.

scholarly journals Multidisciplinary data infrastructures in multiple sclerosis: Why they are needed and can be done!

2018 ◽  
Vol 25 (4) ◽  
pp. 500-509 ◽  
Author(s):  
Liesbet M Peeters ◽  
Caspar EP van Munster ◽  
Bart Van Wijmeersch ◽  
Robin Bruyndonckx ◽  
Ilse Lamers ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Outcome Measures ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Personalized Treatment ◽  
Multidisciplinary Data ◽  
Patient Reported ◽  
Longitudinal Data Collection ◽  
Patient Profiling ◽  
Data Infrastructures

Personalized treatment is highly desirable in multiple sclerosis (MS). We believe that multidisciplinary measurements including clinical, functional and patient-reported outcome measures in combination with extensive patient profiling can enhance personalized treatment and rehabilitation strategies. We elaborate on four reasons behind this statement: (1) MS disease activity and progression are complex and multidimensional concepts in nature and thereby defy a one-size-fits-all description, (2) functioning, progression, treatment, and rehabilitation effects are interdependent and should be investigated together, (3) personalized healthcare is based on the dynamics of system biology and on technology that confirms a patient’s fundamental biology and (4) inclusion of patient-reported outcome measures can facilitate patient-relevant healthcare. We discuss currently available multidisciplinary MS data initiatives and introduce joint actions to further increase the overall success. With this topical review, we hope to drive the MS community to invest in expanding towards more multidisciplinary and longitudinal data collection.

Assessment of computer adaptive testing version of the Neuro-QOL for people with multiple sclerosis

2018 ◽  
Vol 25 (13) ◽  
pp. 1791-1799 ◽  
Author(s):  
Brian C Healy ◽  
Jonathan Zurawski ◽  
Cindy T Gonzalez ◽  
Tanuja Chitnis ◽  
Howard L Weiner ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Outcome Measures ◽  
Computerized Adaptive Testing ◽  
Short Form ◽  
Patient Reported Outcome Measures ◽  
Adaptive Testing ◽  
Patient Reported Outcome ◽  
Longitudinal Change ◽  
Sf 36 ◽  
Patient Reported

Background: To date, the computerized adaptive testing (CAT) version of the Neuro-quality of life (QOL) has not been assessed in a large sample of people with multiple sclerosis (MS). Objective: The aim of this study was to assess the associations between the CAT version of Neuro-QOL and other clinical and patient-reported outcome measures. Methods: Subjects ( n = 364) enrolled in SysteMS completed the CAT version of the Neuro-QOL and the 36-Item Short Form Survey (SF-36) within 4 weeks of a clinical exam that included the Multiple Sclerosis Functional Composite-4 (MSFC-4). The correlations between the Neuro-QOL domains and the MSFC-4 subscores and the SF-36 scores were calculated. The changes over time in the Neuro-QOL and other measures were also examined. Results: The lower extremity functioning score of the Neuro-QOL showed the highest correlations with MSFC-4 components including Timed 25-Foot Walk, 9-Hole Peg Test, and cognitive score. The expected domains of the Neuro-QOL showed high correlations with the SF-36 subscores, and some Neuro-QOL domains were associated with many SF-36 subscores. There was limited longitudinal change on the Neuro-QOL domains over 12 months, and the change was not associated with change on other measures. Conclusion: The CAT version of the Neuro-QOL shows many of the expected associations with clinical and patient-reported outcome measures.

scholarly journals Capturing PROMs in Oncology Through Consistent Nutrition Risk Identification: An Opportunity to Optimize Care by Embedding Patient Participation Facilitated by eHealth Tools

2021 ◽  
pp. 1-2
Author(s):  
Susana  Couto Irving 
Keyword(s):  
Outcome Measures ◽  
Patient Participation ◽  
Cancer Care ◽  
Clinical Care ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Risk Identification ◽  
Nutrition Status ◽  
Pancreatic Tumors ◽  
Patient Reported

Patient-reported outcome measures obtained via E-Health tools ease the assessment burden and encourage patient participation in cancer care (PaCC Study). <b>Background:</b> E-health based patient-reported outcome measures (PROMs) have the potential to automate early identification of both nutrition status and distress status in cancer patients while facilitating treatment and encouraging patient participation. This cross-sectional study assessed the acceptability, accuracy, and clinical utility of PROMs collected via E-Health tools among patients undergoing treatment for stomach, colorectal, and pancreatic tumors. <b>Results:</b> Eight-nine percent mostly, or completely, agreed that PROMs via tablets should be integrated in routine clinical care. Men were significantly more likely to require help completing the questionnaires than women (inv.OR = 0.51, 95% CI = (0.27, 0.95), p = 0.035). The level of help needed increased by 3% with each 1-year increase in age (inv. OR = 1.03, 95% CI = (1.01, 1.06), p = 0.013). On average, a patient tended to declare weight which was 0.84 kg inferior to their true weight (Bland and Altman 95 % CI = (–3.9, 5.6); SD: 2.41) and a height which was 0.95 cm superior to their true height (Bland and Altman 95 % CI = (−5, 3.1); SD 2.08). Patient-reported nutrition status was significantly associated with the professionally generated assessment (95% CI = (2.27, 4.15), p &#x3c; 0.001). As nutrition status declined, the distress score increased (95%CI = (0.88, 1.68), p &#x3c; 0.001). Of the patients, 48.8% who were both distressed and malnourished requested supportive care to address their problems. <b>Conclusion:</b> Patient-reported assessments utilizing E-health tools are an accurate and efficient method to encourage patient participation in cancer care while simultaneously ensuring that regular assessment of psycho-social and nutritional aspects of care are efficiently integrated in the daily clinical routine.

Patient Adoption and Utilization of a Web-Based and Mobile-Based Portal for Collecting Outcomes After Elective Orthopedic Surgery

2018 ◽  
Vol 33 (6) ◽  
pp. 649-656 ◽  
Author(s):  
Kerri Bell ◽  
Eugene Warnick ◽  
Kristen Nicholson ◽  
Sarah Ulcoq ◽  
Seong Jin Kim ◽  
...  
Keyword(s):  
Health Care ◽  
Orthopedic Surgery ◽  
Patient Reported Outcomes ◽  
Elective Surgery ◽  
Mobile App ◽  
Data Capture ◽  
Completion Rates ◽  
Web Based ◽  
Online Portal ◽  
Patient Reported

Health care increasingly collects patient-reported outcomes (PROs) via web-based platforms. The purpose of this study was to evaluate how patient age influences portal engagement. Patients undergoing elective surgery at a single multispecialty orthopedic practice from September 2014 to February 2017 had access to an online portal to complete PROs, message the clinic, and view physical therapy instructions. A mobile app was optionally available. Age, sex, log-in frequency, PRO completion rates, and number of messages sent were reviewed retrospectively. Message frequency, log-in rates, and PRO compliance were highest for patients aged 41 to 50, 51 to 60, and 61 to 70, respectively. Mobile app use decreased with age ( P = .002); yet, at all ages, the mobile app group was more engaged. In particular, for patients aged 18 to 30 years, log-in frequency increased 2.5-fold and PRO compliance improved 44% ( P < .001) in the mobile app group. This study demonstrates that portal interaction varies by age and that data capture is highest in patients who choose the mobile app.

An electronic, unsupervised patient-reported Expanded Disability Status Scale for multiple sclerosis

2020 ◽  
pp. 135245852096881
Author(s):  
Andrew R Romeo ◽  
William M Rowles ◽  
Erica S Schleimer ◽  
Patrick Barba ◽  
Wan-Yu Hsu ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Clinical Care ◽  
Expanded Disability Status Scale ◽  
Clinical Assessments ◽  
Patient Reported ◽  
Disability Status ◽  
Two Measures ◽  
Highly Correlated ◽  
Participation In Research ◽  
Good Agreement

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. Objective: The aim of this study was 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 evaluation. Results: In Cohort 2, mean age was 50.6 years (range = 26–80) and median EDSS was 3.5 (interquartile range (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). Discussion: The ePR-EDSS was highly correlated with 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.

Barriers and Benefits to the Use of Patient-Reported Outcome Measures in Routine Clinical Care: A Qualitative Study

2017 ◽  
Vol 33 (4) ◽  
pp. 359-364 ◽  
Author(s):  
Lindsey M. Philpot ◽  
Sunni A. Barnes ◽  
Rachel M. Brown ◽  
Jessica A. Austin ◽  
Cameron S. James ◽  
...  
Keyword(s):  
Health Care ◽  
Clinical Symptoms ◽  
Rank Order ◽  
Clinical Care ◽  
Well Being ◽  
Patient Reported Outcome Measures ◽  
Perceived Barriers ◽  
Perceived Benefits ◽  
Patient Reported ◽  
Patient Health

Patient-reported outcomes (PROs) provide information on how health care affects patient health and well-being and represent a patient-centered approach. Despite this potential, PROs are not widely used in clinical settings. Semi-structured focus groups were conducted with 3 stakeholder groups (patients, providers, and health care administrators) to determine the top 5 perceived barriers and benefits of PRO implementation. The Delphi technique was employed to obtain consensus and rank order responses. Patients perceived survey length to be important, whereas providers and administrators perceived time to collect data and patient health literacy, respectively, as the greatest barriers to PRO implementation. The greatest perceived benefits were the ability to track changes in clinical symptoms over time, improved quality of care, and better disease control among patients, providers, and administrators, respectively. These results may guide the development of novel frameworks for PRO implementation by addressing perceived barriers and building on the perceived benefits to encourage adoption of PROs.

Implementation and early adaptation of patient-reported outcome measures into an electronic health record: A technical report

2018 ◽  
Vol 26 (1) ◽  
pp. 129-140 ◽  
Author(s):  
Heather Taffet Gold ◽  
Raj J Karia ◽  
Alissa Link ◽  
Rachel Lebwohl ◽  
Joseph D Zuckerman ◽  
...  
Keyword(s):  
Electronic Health Record ◽  
Outcome Measures ◽  
Computerized Adaptive Testing ◽  
Clinical Care ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Measurement Information ◽  
Health Record ◽  
Patient Reported ◽  
Electronic Health

We integrated and optimized patient-reported outcome measures into the electronic health record to provide quantitative, objective data regarding patients’ health status, which is important for patient care, payer contracts, and research. With a multidisciplinary team from information technology, clinical informatics, population health, and physician champions, we used formal human–computer interaction techniques and user-centered design to integrate several technology platforms and computerized adaptive testing for the National Institutes of Health Patient-Reported Outcomes Measurement Information System. The patient-reported outcome measure system leverages software frequently used by health systems and provides data for research and clinical care via a mobile-responsive web application using Symfony, with REDCap for configuring assessments and de-identified data storage. The system incorporates Oracle databases and Epic flowsheets. Patients complete patient-reported outcome measures, with data viewable in MyChart and Epic Synopsis Reports. Researchers can access data portals. The highly usable, successful patient-reported outcome measures platform is acceptable to patients and clinicians and achieved 73 percent overall completion rates.

scholarly journals Reducing survey burden: feasibility and validity of PROMIS measures in multiple sclerosis

2014 ◽  
Vol 20 (8) ◽  
pp. 1102-1111 ◽  
Author(s):  
Angela Senders ◽  
Douglas Hanes ◽  
Dennis Bourdette ◽  
Ruth Whitham ◽  
Lynne Shinto
Keyword(s):  
Multiple Sclerosis ◽  
Patient Reported Outcomes ◽  
Clinical Care ◽  
Good Evidence ◽  
Measurement Information ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Adaptive Tests ◽  
Patient Reported ◽  
Automatic Scoring

Background: Patient-reported outcomes are important for clinical research and care, yet administering and scoring the questionnaires requires considerable effort and time. The Patient Reported Outcomes Measurement Information System (PROMIS) could considerably reduce administrative obstacles and lessen survey burden for participants. Objective: Assess the feasibility and validity of PROMIS, compared to commonly-used legacy measures for multiple sclerosis (MS). Methods: In this cross-sectional survey, 133 participants with confirmed MS completed legacy surveys and PROMIS Computerized Adaptive Tests (CATs) for depression, anxiety, pain, fatigue and physical function. We conducted a multi-trait, multi-method analysis and verified results with confirmatory factor analysis. Results: The correlations between PROMIS and the corresponding legacy measures were large (0.67 to 0.87). The multi-trait, multi-method criteria were generally well met, providing good evidence of the validity of PROMIS measures. PROMIS surveys asked fewer questions and required substantially less time to complete than the legacy scales. Conclusions: Our results provide evidence of the construct validity of PROMIS for use with MS patients. Several aspects of the PROMIS CATs made them an important resource, including: (a) less time was required to complete them; (b) missing data was reduced; and (c) the automatic scoring referenced the general population. Our findings support the use of PROMIS in MS research and may have broader implications for clinical care, as well.

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