MSmonitor - An Interactive Web-Based Tool for Self-Management and Care in People with Multiple Sclerosis Available for Mobile Devices
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Abstract
MSmonitor is an interactive web-based tool for self-management by people with MS (PwMS) and improvement of quality and efficiency of MS care. It is a collaborative project of MS4 Research Institute, Curavista bv, and neurologists and MS-nurses in the Netherlands.
Components are 1) Psychometrically validated self-assessment questionnaires: Multiple Sclerosis Impact Profile (MSIP), Multiple Sclerosis Quality of Life-54 Items (MSQoL-54) (both completed at least every six months), Modified Fatigue Impact Scale-5 Items (MFIS-5), Leeds Multiple Sclerosis Quality of Life (LMSQoL) scale, Medication and Adherence Questionnaire (MAQ) (the latter three questionnaires may be completed monthly [Quick-Scan]), Hospital Anxiety and Depression Scale (HADS), and a Miction Assessment Questionnaire (both available after activation); 2) Diaries: Activities Diary, Miction Diary (both may be completed daily); 3) E-consult; 4) Personal e-logbook.
PwMS visit www.msmonitor.nl to fill in questionnaires, diaries or logbook, or send a secured e-mail to their MS-nurse or neurologist. All data are encrypted, processed and securely stored on the Curavista Health Platform (Oracle database with JAVA-scripting and XML-applets). The software runs on pc’s, tablets and smart phones. Forms are checked for consistency and completeness before submission. Neurologist, MS-nurse and other health care providers of the multidisciplinary team have authorized access to completed questionnaires and automatically generated scores.
Self-management of 1) Fatigue by use of Activities Diary and Quick-Scan, of 2) Miction problems by use of Miction Diary, MSIP and LMSQoL, and of 3) Adherence to medication by the MAQ.
Improvement of quality and efficiency of MS care by 1) Completion of MSIP before consultation; online visualization of the completed MSIP with highlighting of new symptoms, worsened symptoms, and their subjective impact, enabling care givers to identify and prioritize relevant symptoms and unmet needs before consultation; optimal patient-care giver interaction due to complete overview of symptoms and focused attention to most relevant problems; 2) Automatic generation of scores of repeatedly completed questionnaires enables longitudinal quantification of overall neurological condition, overall subjective well-being (health-related quality of life [HRQoL]), and specific symptoms, and thus facilitates early identification of changes and evaluation of treatments; scores and changes over time are represented graphically and in tables; 3) Monitoring of adherence (MAQ); 4) E-mail contact; 5) facilitation of multidisciplinary collaboration.
March 2013: Number of participating PwMS 441 with a monthly increase by 3-4%; 13 neurological practices (neurologist, MS-nurse); four other health-care providers.
PwMS who had used the Quick-Scan and the Activities Diary at least twice in a 6-month period (N=56) showed a statistically significant increase in HRQoL (mean change 13%; P=0.0002), in contrast to those who had completed twice or more the Quick-Scan but had used the Activities Diary only once or not (N=49). Decrease in fatigue (MFIS-5 score) correlated significantly (Spearman -0.29, P=0.028) with the frequency of Activities Diary use. These findings are in line with the hypothesis that the combined use of Activities Diary and Quick-Scan facilitates self-management of fatigue.
Current developments: Validation of an 8-Items quick scan questionnaire for miction problems. Development of modules for monitoring disease modifying and symptomatic treatments.
Components are 1) Psychometrically validated self-assessment questionnaires: Multiple Sclerosis Impact Profile (MSIP), Multiple Sclerosis Quality of Life-54 Items (MSQoL-54) (both completed at least every six months), Modified Fatigue Impact Scale-5 Items (MFIS-5), Leeds Multiple Sclerosis Quality of Life (LMSQoL) scale, Medication and Adherence Questionnaire (MAQ) (the latter three questionnaires may be completed monthly [Quick-Scan]), Hospital Anxiety and Depression Scale (HADS), and a Miction Assessment Questionnaire (both available after activation); 2) Diaries: Activities Diary, Miction Diary (both may be completed daily); 3) E-consult; 4) Personal e-logbook.
PwMS visit www.msmonitor.nl to fill in questionnaires, diaries or logbook, or send a secured e-mail to their MS-nurse or neurologist. All data are encrypted, processed and securely stored on the Curavista Health Platform (Oracle database with JAVA-scripting and XML-applets). The software runs on pc’s, tablets and smart phones. Forms are checked for consistency and completeness before submission. Neurologist, MS-nurse and other health care providers of the multidisciplinary team have authorized access to completed questionnaires and automatically generated scores.
Self-management of 1) Fatigue by use of Activities Diary and Quick-Scan, of 2) Miction problems by use of Miction Diary, MSIP and LMSQoL, and of 3) Adherence to medication by the MAQ.
Improvement of quality and efficiency of MS care by 1) Completion of MSIP before consultation; online visualization of the completed MSIP with highlighting of new symptoms, worsened symptoms, and their subjective impact, enabling care givers to identify and prioritize relevant symptoms and unmet needs before consultation; optimal patient-care giver interaction due to complete overview of symptoms and focused attention to most relevant problems; 2) Automatic generation of scores of repeatedly completed questionnaires enables longitudinal quantification of overall neurological condition, overall subjective well-being (health-related quality of life [HRQoL]), and specific symptoms, and thus facilitates early identification of changes and evaluation of treatments; scores and changes over time are represented graphically and in tables; 3) Monitoring of adherence (MAQ); 4) E-mail contact; 5) facilitation of multidisciplinary collaboration.
March 2013: Number of participating PwMS 441 with a monthly increase by 3-4%; 13 neurological practices (neurologist, MS-nurse); four other health-care providers.
PwMS who had used the Quick-Scan and the Activities Diary at least twice in a 6-month period (N=56) showed a statistically significant increase in HRQoL (mean change 13%; P=0.0002), in contrast to those who had completed twice or more the Quick-Scan but had used the Activities Diary only once or not (N=49). Decrease in fatigue (MFIS-5 score) correlated significantly (Spearman -0.29, P=0.028) with the frequency of Activities Diary use. These findings are in line with the hypothesis that the combined use of Activities Diary and Quick-Scan facilitates self-management of fatigue.
Current developments: Validation of an 8-Items quick scan questionnaire for miction problems. Development of modules for monitoring disease modifying and symptomatic treatments.
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