MSmonitor – An Interactive Web-Based Tool
for Self-Management and Multidisciplinary
Care in People with Multiple Sclerosis
Peter Joseph Jongen, Ludovicus O. Sinnige, Björn van Geel, Freek Verheul, Wim Verhagen, Ruud van der Kruijk, Reinoud
Haverkamp, Hans Schrijver, Coby Baart, Leo H Visser, Edo Arnoldus, Job Gilhuis, Paul Pop, Monique Booy, Esther van
Noort; the Netherlands
Pilot data support the notion that the interactive web-based tool MSmonitor improves
- Self-management by people with MS (PwMS) - Quality & efficiency of professional MS care
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Untreated PwMS
Early detection of worsening to timely start - disease modifying treatment or
- treatment of symptoms
Treated PwMS
Assessment of effectiveness and side effects: continuation or switch of treatment
Monitoring process & treatment via
- Persons with Multiple Sclerosis PwMS
- Neurologists, MS Nurses MS Professionals
- Psychologist, occupational,
speech therapist, urologist, Multiple disciplines
rehabilitation doctor, ….
- Curavista bv ICT
- MS4 Research Institute Scientific support
- TEVA Netherlands (sanofi-aventis) Funding 7
1) Facilitate self-management by PwMS 2) Improve quality & efficiency of professional MS care
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Scheme
1) Validated questionnaires 2) Inventories 3) Diaries 4) E-consult 5) Personal e-logbook
Components
- Psychometrically validated
- Automatically generated scores
- Scores presented in graphs and tables
1) MS Impact Profile MSIP
2) MS Quality of Life-54 MSQoL-54
3) Modified Fatigue Impact Scale-5 MFIS-5
4) Leeds MS QoL questionnaire LMSQoL
5) Hospital Depression Anxiety Scale HADS
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MSIP: Domain Scores
- Muscle and Movement Functions
- Excretion and Reproductive Functions - Basic Movement Activities
- Activities of Daily Living
- Participation in Life Situations - Environmental Factors
- Mental Functions
1) Miction Inventory
- combination of 2 validated questionnaires - not validated, no score
- complete overview!
2) Medication & Adherence Inventory
- Medication update
- Number of missed doses MS treatment - (Dis)continuation of MS treatment
1) Activities Diary
2) Miction Diary
- Quantity of Miction
- Quantity of Fluid Intake
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Availability & Frequency (1)
Available FOR EVERY PwMS MFIS-5, LMSQoL,Med.&Adherence (‘Quickscan’)
Monthly
MSIP 6-monthly & monthly
MSQoL-54 Annually
Diaries (Activities, Miction) Daily
Availability & Frequency (2)
Available AFTER ACTIVATION BY NEUROLOGIST/NURSE HADS If sub-score > 8, then
alert on dashboard for neurologist/nurse
Smart phones: selective use of MSmonitor - E-consult
- Diaries
- Short questionnaires - Screening
Tablets: full use of MSmonitor - incl. long questionnaires
Symptoms may interfere with use of smart phone!
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- 510 PwMS registered by neurologist or nurse - 459 (90%) PwMS started using MSmonitor:
‘selective’ participation rate
- 89 PwMS: latest use > 1.5 years ago
= 19% of active users (‘attrition rate’?)
- 13 hospitals (actually 15 hospitals)
1) Retrospective analysis of MFIS-5, LMSQoL and Activities Diary data (N=56)
Hypothesis: Combined use of MFIS-5, LMSQoL and Activities Diary is associated with decrease in fatigue and increase in HRQoL (Self-management of fatigue) 2) Survey of PwMS (N=55), Neurologists and Nurses (N=13) (Version 1.0)
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PwMS who had used the MFIS-5, LMSQoL and
Activities Diary at least twice in a 6-month period showed an increase in HRQoL (mean +13%)
(P=0.0002)
compared to those who had completed the MFIS-5 and LMSQoL, but not the Activities Diary, at
least twice in a 6-month period
- Regular overview of all symptoms and problemsinsight - Easier to start conversation with neurologist/nurse
- More items discussed with neurologist/nurse - Direct mail contact (e-consult)
- Forced reflection
- Medical file in spite of infrequent out-patient visits - Look back
- Better preparation for out-patient visits
- Contact with Dutch professionals in spite of living abroad
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- Sometimes too tiring
- Repeatedly same questions, whereas situation is stable - Too complicated
- Activities Diary too general - Confronting
- Impossible to answer ‘Not Applicable’ - Forget to look at e-mail
- No space for free text
- Monthly completion is too frequent - Log in procedure
Mean overall satisfaction (N=55) (0-10): 7.0
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MS Professionals Survey
More insight in symptoms? Yes No
Neurologists 3 1 1
MS-nurses 4 3 1
Improved efficiency of care? Yes No
Neurologists 4 1
MS-nurses 4 3 1
Improved quality of care? Yes No
Neurologists 4 1
Mean overall satisfaction (N=13) (0-10): 7.4
100% would recommend MSmonitor to colleagues
Modular application on Curavista Health Platform Build on Oracle database with JAVA-scripting, XML-applets and AJAX protocols
Data processing is 256-bit encrypted with VPN-tunnelling
Databases physically and software secured in a dedicated data centre in the Netherlands
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PwMS give electronic consent for
- storage of personal data & responses in database
- access to data by attending Health Care Professionals of their choice
- anonimized analysis of responses for
scientific purposes and improvement of content
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Pilot data support the notion that the interactive web-based tool MSmonitor improves
- Self-management by people with MS (PwMS) - Quality & efficiency of professional MS care
MSmonitor in 60 seconds:
www.msmonitor.nl/msmonitoruk/index.html
Dutch MSmonitor website:
www.msmonitor.nl
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