scholarly journals Evaluation of More Stamina, a Mobile App for Fatigue Management in Persons with Multiple Sclerosis: Protocol for a Feasibility, Acceptability, and Usability Study

10.2196/18196 ◽  
2020 ◽  
Vol 9 (8) ◽  
pp. e18196
Author(s):  
Guido Giunti ◽  
Octavio Rivera-Romero ◽  
Jan Kool ◽  
Jens Bansi ◽  
Jose Luis Sevillano ◽  
...  

Background Multiple sclerosis (MS) is one of the world’s most common neurologic disorders leading to severe disability in young adults. MS-related fatigue directly impacts on the quality of life and activity levels of people with MS. Self-management strategies are used to support them in the care of their health. Mobile health (mHealth) solutions can offer tools to help symptom management. Following a user-centered design and evidence-based process, an mHealth solution called More Stamina was created to help persons with MS manage their fatigue. Objective The overall study aims are to explore the feasibility, acceptability, and usability of More Stamina, a mobile app for fatigue self-management for persons with MS. Methods A mixed-methods, multicenter study will be used to assess the feasibility, acceptability, and usability of More Stamina. The study will take place during the third and fourth quarters of 2020 (Q3-Q4 2020) in 3 locations: Argentina, Spain, and Switzerland. A longitudinal cohort study will take place, and think-aloud protocols, open-ended interviews, and short answer questionnaires will be used. Persons with MS will be recruited from the different locations. This study seeks to enroll at least 20 patients that meet the criteria from each site for the longitudinal cohort study (total n=60). Results Ethical approval has been granted in Argentina and is pending in Spain and Switzerland. Outcomes will be published in peer-reviewed medical journals and presented at international conferences. Conclusions Findings from this study will be used to help understand the role that mHealth can play in fatigue management in MS. Trial Registration ClinicalTrials.gov NCT04244214; https://clinicaltrials.gov/ct2/show/NCT04244214 International Registered Report Identifier (IRRID) PRR1-10.2196/18196

2020 ◽  
Author(s):  
Guido Giunti ◽  
Octavio Rivera-Romero ◽  
Jan Kool ◽  
Jens Bansi ◽  
Jose Luis Sevillano ◽  
...  

BACKGROUND Multiple sclerosis (MS) is one of the world’s most common neurologic disorders leading to severe disability in young adults. MS-related fatigue directly impacts on the quality of life and activity levels of people with MS. Self-management strategies are used to support them in the care of their health. Mobile health (mHealth) solutions can offer tools to help symptom management. Following a user-centered design and evidence-based process, an mHealth solution called More Stamina was created to help persons with MS manage their fatigue. OBJECTIVE The overall study aims are to explore the feasibility, acceptability, and usability of More Stamina, a mobile app for fatigue self-management for persons with MS. METHODS A mixed-methods, multicenter study will be used to assess the feasibility, acceptability, and usability of More Stamina. The study will take place during the third and fourth quarters of 2020 (Q3-Q4 2020) in 3 locations: Argentina, Spain, and Switzerland. A longitudinal cohort study will take place, and think-aloud protocols, open-ended interviews, and short answer questionnaires will be used. Persons with MS will be recruited from the different locations. This study seeks to enroll at least 20 patients that meet the criteria from each site for the longitudinal cohort study (total n=60). RESULTS Ethical approval has been granted in Argentina and is pending in Spain and Switzerland. Outcomes will be published in peer-reviewed medical journals and presented at international conferences. CONCLUSIONS Findings from this study will be used to help understand the role that mHealth can play in fatigue management in MS. CLINICALTRIAL ClinicalTrials.gov NCT04244214; https://clinicaltrials.gov/ct2/show/NCT04244214 INTERNATIONAL REGISTERED REPORT PRR1-10.2196/18196


2018 ◽  
Vol 7 (2) ◽  
pp. e68 ◽  
Author(s):  
Tijn van Diemen ◽  
Eline WM Scholten ◽  
Ilse JW van Nes ◽  
Jan HB Geertzen ◽  
Marcel WM Post ◽  
...  

2005 ◽  
Vol 4 (10) ◽  
pp. 611-617 ◽  
Author(s):  
A Dessa Sadovnick ◽  
Irene ML Yee ◽  
George C Ebers

PLoS ONE ◽  
2012 ◽  
Vol 7 (11) ◽  
pp. e50101 ◽  
Author(s):  
Tomas Kalincik ◽  
Manuela Vaneckova ◽  
Michaela Tyblova ◽  
Jan Krasensky ◽  
Zdenek Seidl ◽  
...  

2017 ◽  
Author(s):  
Tijn van Diemen ◽  
Eline WM Scholten ◽  
Ilse JW van Nes ◽  
Jan HB Geertzen ◽  
Marcel WM Post ◽  
...  

2015 ◽  
Vol 32 (9) ◽  
pp. 1247-1254 ◽  
Author(s):  
J. Houle ◽  
M.-D. Beaulieu ◽  
J.-L. Chiasson ◽  
F. Lespérance ◽  
J. Côté ◽  
...  

2018 ◽  
Vol 80 (3-4) ◽  
pp. 223-227 ◽  
Author(s):  
Filipa Ladeira ◽  
Manuel Salavisa ◽  
André Caetano ◽  
Raquel Barbosa ◽  
Francisca Sá ◽  
...  

Background: Hormonal variations are known to influence the course of multiple sclerosis (MS). Objectives: We aimed to evaluate the impact of menopause in MS course, including disease activity and disability progression. Methods: We conducted a retrospective longitudinal cohort study including all women, older than 44, post-menopausal, with a diagnosis of MS at least 1 year before menopause. We evaluated the impact of menopause in MS course comparing clinical and radiologic outcomes within 5 years before and after menopause. We repeated the analysis in subgroups of patients without disease-modifying treatment (DMT) change or co-morbidities diagnosed during the observation period, considering that those factors might also impact MS outcomes. Results: Thirty-seven women, with a mean age at the time of menopause of 49.8 (±4.06) years were included in the analysis. Within 5 years following menopause, we observed a decrease in the annualized relapse rate (0.37 ± 0.35 pre-menopause vs. 0.08 ± 0.18 post-menopause, p < 0.001) compared with the same period before menopause, while the EDSS progression rate remained stable (0.13 ± 0.24 EDSS point/year pre-menopausal vs. 0.13 ± 0.18 post-menopause, p = 0.935). EDSS progression events frequency was similar before and after the menopause (37.8 vs. 48.6%, respectively, p = 0.424). These observations persisted in patients’ subgroups without DMT switch or co-morbidities. Conclusions: Following menopause, we observed a reduction in the relapse rate, but the disability progression continued at a similar rate, compared to the pre-menopausal period. These observations persisted in the subgroup of patients without changes in DMT or co-morbidities diagnosed during the observation period.


2017 ◽  
Author(s):  
Tijn van Diemen ◽  
Eline WM Scholten ◽  
Ilse JW van Nes ◽  
Jan HB Geertzen ◽  
Marcel WM Post ◽  
...  

BACKGROUND People with recently acquired spinal cord injury (SCI) experience changes in physical, social and psychological aspects of their lives. In the last decades, attention has grown for aspects of self-management and self-efficacy in SCI research. However, we still do not know what the self-management and self-efficacy outcomes of first rehabilitation are and whether utilizing these skills may prevent secondary health conditions (SHCs) and increase participation and psychological adjustment early after SCI. OBJECTIVE To describe the course and determinants of self-management and self-efficacy during and after first SCI rehabilitation; and to determine theory-based associations between self-management and self-efficacy with SHCs, participation and psychological adjustment. METHODS Multicenter prospective longitudinal cohort study. All people with a newly acquired SCI admitted to one of the 8 specialized SCI rehabilitation centers in the Netherlands will be considered for inclusion in this study. Main assessments will take place during the first and last week of admission and 3, 6 and 12 months after discharge. The target sample is 250 participants. The primary outcomes are self-management (knowledge and execution of self-care) and self-efficacy (confidence in the ability to manage the consequences of SCI and of self-care). Secondary outcome measures are SHCs, participation and psychological adjustment to SCI. RESULTS The first results with the complete set of data are expected in June 2019. CONCLUSIONS This protocol describes the SELF-SCI cohort study investigating self-management and self-efficacy of initial inpatient SCI rehabilitation. Second, associations will be investigated with SHCs, participation and psychological adjustment early after onset of SCI, until 1 year after discharge. The results will be used to test theories about motivation to perform health-promoting behaviors and adjustment to SCI.


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