MSmonitor An Interactive Web-Based Tool for Self-Management and Multidisciplinary Care in People with Multiple Sclerosis
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1 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 1
2 Take Home Message 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 2
3 Spain et al. BMC Medicine :74 doi: /
4 Why Monitoring MS? 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 self-management & professional care 4
5 Multiple Lesions on Brain MRI
6 Multidisciplinary MS Care 6
7 Collaborative Project - Persons with Multiple Sclerosis PwMS - Neurologists, MS Nurses MS Professionals - Psychologist, occupational, speech therapist, urologist, rehabilitation doctor,. Multiple disciplines - Curavista bv ICT - MS4 Research Institute Scientific support - TEVA Netherlands (sanofi-aventis) Funding 7
8 Disease Management 1) Facilitate self-management by PwMS 2) Improve quality & efficiency of professional MS care 8
9 Tablets & Mobile Devices 9
10 10
11 Scheme Progress 11
12 Components 1) Validated questionnaires 2) Inventories 3) Diaries 4) E-consult 5) Personal e-logbook 12
13 Questionnaires - 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 13
14 MSIP: Objective & Subjective 14
15 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 Monitoring Objective Impact & Subjective Problems 15
16 Inventories 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 16
17 Diaries 1) Activities Diary 2) Miction Diary - Quantity of Miction - Quantity of Fluid Intake 17
18 E-consult 18
19 Availability & Frequency (1) Available FOR EVERY PwMS MFIS-5, LMSQoL, Med.&Adherence ( Quickscan ) MSIP MSQoL-54 Diaries (Activities, Miction) E-consult Monthly 6-monthly & monthly Annually Daily When needed 19
20 Availability & Frequency (2) Available AFTER ACTIVATION BY NEUROLOGIST/NURSE HADS Miction Inventory If sub-score > 8, then alert on dashboard for neurologist/nurse 20
21 Smart Phones & Tablets 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! 21
22 Descriptive Statistics PwMS registered by neurologist or nurse (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) - 60% overall participation rate 22
23 Data Analysis 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) 23
24 Self-management of Fatigue 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 24
25 PwMS Survey: Advantages - Regular overview of all symptoms and problems insight - 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 25
26 PwMS Survey: Disadvantages - 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 - No space for free text - Monthly completion is too frequent - Log in procedure Mean overall satisfaction (N=55) (0-10): % would recommend MSmonitor to other PwMS 26
27 MS Professionals Survey More insight in symptoms? Yes No Neurologists MS-nurses Improved quality of care? Yes No Neurologists 4 1 MS-nurses Improved efficiency of care? Yes No Neurologists 4 1 MS-nurses
28 MS Professionals Survey Mean overall satisfaction (N=13) (0-10): % would recommend MSmonitor to colleagues 28
29 Technics & Security Modular application on Curavista Health Platform Build on Oracle database with JAVA-scripting, XMLapplets and AJAX protocols Data processing is 256-bit encrypted with VPNtunnelling Databases physically and software secured in a dedicated data centre in the Netherlands 29
30 Ethics 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 30
31 Take Home Message 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: Dutch MSmonitor website: 31
32 1. The new drugs of Perspectives on future drugs in MS and recent changes in trial methodology 3. Reimbursement and pharmacoeconomics 4. Self-assessment and monitoring of therapeutic value 32
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