ARMS

Advancing Research in Multiple Sclerosis

MS Data Automation
for Work Status Monitoring in MS

ARMS raised $25,000 towards the costs for this study
As of 9/15/2019  five studies that benefited from this support have been published

During 2013-14, ARMS raised almost $25,000 for a Data Automation Project directed by Ralph Benedict, PhD, Professor of Neurology and clinical director in the Jacobs School of Medicine and Biomedical Sciences Department of Neurology at the State University of New York at Buffalo.

As our first funding project, ARMS founders responded to a very practical need: how to help the researchers working on a study to discover how to help people with MS remain in the workforce longer speed up the research process so their findings could be published sooner? 

We felt that the Work Status Monitoring in Multiple Sclerosis study could have important practical personal and long-term financial implications for people with MS and their families so we responded to this need. The study's goal was to learn the financial and psychological impact on a person with MS when time in the workforce can be extended by even a few years. The study also looked at workplace productivity, costs to state and federal government, and at stress on families of people with MS.


The Challenge to Participants and Research Assistants
Participants in this study, and countless others, fill out paper questionnaires while in the clinic waiting room. Due to MS numbness, some participants find it hard to fill out the questionnaires.  Once completed, the questionnaires must then be keyed into a database by research assistants before the results can be analyzed. This takes time.  

In administering tests, research assistants use scoring sheets and a pencil to note a participant's score. These sheets also need to be keyed manually into a database for analysis.   

ARMS contributions were used to purchase iPads and to cover costs related to programming. Now, study participants can use a clinic iPad to enter their responses, which are then downloaded directly into the research database.  Research assistants can enter test scores into their study database, too.

Automating the research process speeded up the time to get data ready for analysis and that speeds up research.
The iPads are also available for use by other MS researchers in the MS Division of the University at Buffalo's Department of Neurology. 
  • Dr. Ralph Benedict opens an iPad.
    Dr. Ralph Benedict opens an iPad.
  • Former NY State Senator Mark Grisanti, Dr. Ralph Benedict, and Pam Jacobs.
    Former NY State Senator Mark Grisanti, Dr. Ralph Benedict, and Pam Jacobs.
  • Dr. Gil Wolfe gets tour of on-line survey by staff.
    Dr. Gil Wolfe gets tour of on-line survey by staff.
Dr. Ralph Benedict opens an iPad.
Dr. Ralph Benedict opens an iPad.


Work Status Monitoring in MS 
Publications
using automated data collection funded by ARMS

 



Negative work events and accommodations 
in employed multiple sclerosis patients.

Mult Scler. 2014 Jan;20(1):116-9. doi: 10.1177/1352458513494492. Epub 2013 Jul 10.

Negative work events and accommodations in employed multiple sclerosis patients.

Benedict RH1, Rodgers JDEmmert NKininger RWeinstock-Guttman B.

Author information

Department of Neurology, SUNY Buffalo School of Medicine, USA.


Abstract

Work disability is common in multiple sclerosis (MS) and cognitive disorder discriminates disabled from employed patients. Our goal was to develop and validate an online vocational status monitoring tool measuring negative work events and use of accommodations. We enrolled 52 employed patients completing an online survey and a clinical examination including tests of motor function, cognitive abilities, and depression. The survey recorded a wide range of reported work problems. Regression models predicting negative work events, and use of accommodations, retained measures of ambulation, cognition, and depression.


These data provide preliminary support for the validity of online vocational monitoring in MS.


KEYWORDS: Multiple sclerosis; cognitive impairment; disability; work capacity 

 


Identifying employed multiple sclerosis patients 

at-risk for job loss: 


When do negative work events pose a threat?

Mult Scler Relat Disord. 2015 Sep;4(5):409-413. doi: 10.1016/j.msard.2015.07.005. Epub 2015 Jul 8.
Identifying employed multiple sclerosis patients at-risk for job loss: When do negative work events pose a threat?
Author information
1Department of Neurology, University at Buffalo, State University of New York (SUNY), Buffalo, NY, USA.2Department of Neurology, University at Buffalo, State University of New York (SUNY), Buffalo, NY, USA. Electronic address: [email protected]

Abstract

BACKGROUND:

Physical disability and cognitive impairment are significant predictors of unemployment in multiple sclerosis (MS). However, little is known about the frequency of work problems in employed patients, in comparison to employed healthy persons.

OBJECTIVE:

Use an online monitoring tool to compare the frequency of negative work events in MS patients and healthy controls, and determine a threshold at which the frequency of work problems is clinically meaningful.


METHODS:

The sample comprised 138 MS patients and 62 healthy controls. All reported on recent negative work events and accommodations using an online survey. The clinical test battery measured depression, motor and cognitive function. Statistical tests compared the frequency of work problems in MS patients and healthy controls. Clinical neuro-performance scales were then assessed in at-risk patients with many work problems, versus those with no work problems.


RESULTS:

As a group, employed MS patients exhibited deficits in motor ability, verbal memory, and processing speed and were more likely than controls to report negative work events and accommodations. At-risk patients, that is, those reporting more than one negative work event, had more pronounced motor and cognitive deficits than their relatively stable counterparts.


CONCLUSION:

The data show that employed MS patients report more negative work events and accommodations than employed healthy persons. Those patients deemed at risk for job loss have more cognitive and motor impairment, suggesting the need for cognitive training and specific accommodation strategies in the work place.

Copyright © 2015 Elsevier B.V. All rights reserved.


KEYWORDS:

Cognition; Disability; Employment; Multiple sclerosis; Negative work events; Work accommodations

PMID: 26346789 DOI: 10.1016/j.msard.2015.07.005

 


Negative work events reported online precede job loss in multiple sclerosis.

J Neurol Sci.
2015 Oct 15;357(1-2):209-14. doi: 10.1016/j.jns.2015.07.032. Epub 2015 Jul 26.
Negative work events reported online precede job loss in multiple sclerosis.
Author information
1Department of Neurology, School of Medicine and Biomedical Sciences, University at Buffalo, State University of New York, Buffalo, NY, USA; Department of Psychiatry, School of Medicine and Biomedical Sciences, University at Buffalo, State University of New York, Buffalo, NY, USA.2Department of Neurology, School of Medicine and Biomedical Sciences, University at Buffalo, State University of New York, Buffalo, NY, USA; Department of Psychiatry, School of Medicine and Biomedical Sciences, University at Buffalo, State University of New York, Buffalo, NY, USA. Electronic address: [email protected]

Abstract

PURPOSE:

Determine if a recently validated online survey of negative work events can predict future job loss among multiple sclerosis (MS) patients.


METHOD:

Evaluated were 284 employed individuals (63 healthy controls, 221 MS patients), every three months, using an online vocational monitoring tool. Job loss rates in MS patients were compared with the healthy controls. Survey responses from MS patients suffering job loss (n=23) were then compared to those maintaining employment. Analyses focused on the frequency of negative work events.


RESULTS:

While 23 (10%) of MS patients lost their job after baseline, there was no job loss among the healthy controls. Compared to stably employed patients, those suffering job loss had been diagnosed with MS later in life, were more likely to report a progressive disease course, and had greater physical disability as measured by the Patient Derived Disease Steps (PDDS). Declining patients were also more likely to report negative work events within three months of job loss (e.g., verbal criticism for errors or removal of responsibilities). Stepwise logistic regression predicting MS job loss retained the PDDS, age at diagnosis, years working for employer and reporting a negative work event.


CONCLUSIONS:

The results show that physical disability and patient reported risk factors for job loss can be monitored using an online survey tool. The tool can trigger clinical assessments to help prevent unemployment and assist patients in procuring disability benefits.

Copyright © 2015 Elsevier B.V. All rights reserved.


KEYWORDS:

Employment; Job loss; Monitoring survey; Multiple sclerosis; Negative work events; Vocation

PMID: 26238165 DOI: 10.1016/j.jns.2015.07.032
 



Disclosure of disease status among employed multiple sclerosis patients: 

association with negative work events and accommodations.

Mult Scler.
2015 Feb;21(2):225-34. doi: 10.1177/1352458514540971. Epub 2014 Jul 28.
Disclosure of disease status among employed multiple sclerosis patients: association with negative work events and accommodations.
Author information
1University at Buffalo, State University of New York (SUNY), USA.2University at Buffalo, State University of New York (SUNY), USA [email protected]

Abstract

BACKGROUND:

Unemployment is common in multiple sclerosis (MS) and detrimental to quality of life. Studies suggest disclosure of diagnosis is an adaptive strategy for patients. However, the role of cognitive deficits and psychiatric symptoms in disclosure are not well studied.

OBJECTIVE:

The goals of this paper were to (a) determine clinical factors most predictive of disclosure, and (b) measure the effects of disclosure on workplace problems and accommodations in employed patients.


METHODS:

We studied two overlapping cohorts: a cross-sectional sample (n = 143) to determine outcomes associated with disclosure, and a longitudinal sample (n = 103) compared at four time points over one year on reported problems and accommodations. A case study of six patients, disclosing during monitoring, was also included.


RESULTS:

Disclosure was associated with greater physical disability but not cognitive impairment. Logistic regression predicting disclosure status retained physical disability, accommodations and years of employment (p < 0.0001). Disclosed patients reported more work problems and accommodations over time. The case study revealed that reasons for disclosing are multifaceted, including connection to employer, decreased mobility and problems at work.


CONCLUSION:

Although cognitive impairment is linked to unemployment, it does not appear to inform disclosure decisions. Early disclosure may help maintain employment if followed by appropriate accommodations.


© The Author(s), 2014.


KEYWORDS:

Multiple sclerosis; disability; disclosure; problems at work; work accommodations

PMID: 25070678 DOI: 10.1177/1352458514540971
 


Latent profile analysis of regression-based norms 

demonstrates relationship of 

compounding MS symptom burden 

and 

negative work events


Clin Neuropsychol.
2016 Oct;30(7):1050-62. doi: 10.1080/13854046.2016.1200144. Epub 2016 Jun 21.
Latent profile analysis of regression-based norms demonstrates relationship of compounding MS symptom burden and negative work events.
Author information
1a Department of Neurology , University at Buffalo School of Medicine and Biomedical Sciences , Buffalo , NY , USA.
Abstract

OBJECTIVE:

We endeavored to clarify how distinct co-occurring symptoms relate to the presence of negative work events in employed multiple sclerosis (MS) patients. Latent profile analysis (LPA) was utilized to elucidate common disability patterns by isolating patient subpopulations.


METHOD:

Samples of 272 employed MS patients and 209 healthy controls (HC) were administered neuroperformance tests of ambulation, hand dexterity, processing speed, and memory. Regression-based norms were created from the HC sample. LPA identified latent profiles using the regression-based z-scores. Finally, multinomial logistic regression tested for negative work event differences among the latent profiles.


RESULTS:

Four profiles were identified via LPA: a common profile (55%) characterized by slightly below average performance in all domains, a broadly low-performing profile (18%), a poor motor abilities profile with average cognition (17%), and a generally high-functioning profile (9%). Multinomial regression analysis revealed that the uniformly low-performing profile demonstrated a higher likelihood of reported negative work events.


CONCLUSIONS:

Employed MS patients with co-occurring motor, memory and processing speed impairments were most likely to report a negative work event, classifying them as uniquely at risk for job loss.


KEYWORDS:

Multiple sclerosis; latent profile analysis; negative work events; regression-based norms; symptom burden

PMID: 27326756 DOI: 10.1080/13854046.2016.1200144