scholarly journals A Smartphone-based Application for Self-Management in Multiple Sclerosis

2021 ◽  
Vol 2021 ◽  
pp. 1-7
Author(s):  
Mahdieh Mokhberdezfuli ◽  
Haleh Ayatollahi ◽  
Abdorreza Naser Moghadasi

Background. Multiple sclerosis (MS) is a chronic inflammation of the central nervous system and self-management is necessary for MS patients. The purpose of the present study was to develop a smartphone-based application for self-management in multiple sclerosis. Methods. This research was conducted in two phases. In the first phase, users’ requirements were investigated by using a questionnaire. The participants were 120 MS patients and six neurologists. In the second phase, a prototype of the application was designed and its usability was evaluated by using QUIS questionnaire. Results. Most of the proposed educational content, data elements, and the application functions, such as medication time reminder, assessing the severity of fatigue, and calculating the score of the Fatigue Severity Scale were found necessary to be included in the application. Finally, the usability of the application was evaluated by the users and the average of mean values was 7.6 out of 9 which indicated a “good” level of user satisfaction. Conclusions. The application designed in this study was able to collect patient data and facilitated consulting physicians at the point of need. It is expected that the patients’ quality of life and health status can be improved by using this application. However, more research is required to investigate the efficiency and effectiveness of this application in terms of reducing the number of visits to the medical centers, improving self-management skills of MS patients and their quality of life.

Author(s):  
Malachy Bishop ◽  
Michael Frain

Multiple sclerosis (MS) is a chronic neurological condition that can impact one’s health and functioning, role participation, and quality of life in a wide variety of ways. Self-management is increasingly recognized as a critical component of MS care and a person-directed approach to health and wellness. Given the range of ways that MS may affect physical and cognitive as well as psychosocial functioning, effective and comprehensive MS self-management may require a broad range of knowledge and resources. Thus this chapter explores current perspectives on MS self-management, evaluates the research evidence and current research directions, and identifies effective practices in MS self-management.


2016 ◽  
Vol 99 (8) ◽  
pp. 1355-1361 ◽  
Author(s):  
Gunda Musekamp ◽  
Jürgen Bengel ◽  
Michael Schuler ◽  
Hermann Faller

2015 ◽  
Vol 20 (4) ◽  
pp. 242-255 ◽  
Author(s):  
Andy Turner ◽  
Alba X. Realpe ◽  
Louise M. Wallace ◽  
Joanna Kosmala-Anderson

Purpose – There is growing interest in self-management support for people living with mental health problems. The purpose of this paper is to describe the evaluation of a co-designed and co-delivered self-management programme (SMP) for people living with depression delivered as part of large scale National Health Service quality improvement programme, which was grounded in the principles of co-production. The authors investigated whether participants became more activated, were less psychologically distressed enjoyed better health status, and quality of life, and improved their self-management skills after attending the seven-week SMP. Design/methodology/approach – The authors conducted a longitudinal study of 114 people living with depression who attended the SMP. Participants completed self-reported measures before attending the SMP and at six months follow up. Findings – Patient activation significantly improved six months after the SMP (baseline M=49.6, SD=12.3, follow up M=57.2, SD=15.0, t(113)=4.83, p < 0.001; d=0.61). Participants’ experience of depression symptoms as measured by the Patient Health Questionnaire-9 significantly reduced (baseline M=15.5, SD=6.8, follow up M=10.6, SD=6.9, t(106)=7.22, p < 0.001, d=−0.72). Participants’ anxiety and depression as measured by the Hospital Anxiety Depression Scale also decreased significantly (baseline anxiety: M=13.1, SD=4.2, follow up M=10.2, SD=4.4, t(79)=6.29, p < 0.001, d=−0.69); (baseline depression: M=10.3, SD=4.6, follow up M=7.7, SD=4.5, t(79)=5.32, p < 0.001, d=−0.56). The authors also observed significant improvement in participants’ health status (baseline M=0.5, SD=0.3, follow up M=0.6, SD=0.3, t(97)=−3.86, p < 0.001, d=0.33), and health-related quality of life (baseline M=45.4, SD=20.5, follow up M=60.8, SD=22.8, t(91)=−2.71, p=0.008, d=0.75). About 35 per cent of participant showed substantial improvements of self-management skills. Originality/value – The co-produced depression SMP is innovative in a UK mental health setting. Improvements in activation, depression, anxiety, quality of life and self-management skills suggest that the SMP could make a useful contribution to the recovery services in mental health.


10.2196/14297 ◽  
2020 ◽  
Vol 22 (3) ◽  
pp. e14297
Author(s):  
Peter Joseph Jongen ◽  
Gezien ter Veen ◽  
Wim Lemmens ◽  
Rogier Donders ◽  
Esther van Noort ◽  
...  

Background Empowerment helps persons with a chronic disease to self-manage their condition and increase their autonomy and participation. MSmonitor (Curavista bv) is an interactive Web-based program for self-management and multidisciplinary care in multiple sclerosis (MS). It includes, among others, short questionnaires on fatigue (Modified Fatigue Impact Scale-5 [MFIS-5]) and health-related quality of life (HRQoL, Leeds Multiple Sclerosis Quality of Life [LMSQoL]); long questionnaires on disabilities, perception of disabilities (Multiple Sclerosis Impact Profile), and HRQoL (Multiple Sclerosis Quality of Life-54); a Medication and Adherence Inventory and an Activity Diary. The combination MFIS-5, LMSQoL, and Medication and Adherence Inventory constitutes the Quick Scan. Objective This study aimed to investigate the short-term effects of MSmonitor on empowerment in patients with MS. Methods We conducted a quasi-experimental study in a general hospital. Of the 180 patients with MS, 125 were eligible, 30 used MSmonitor, and 21 participated in the study (mean age 45.4 years, SD 10.2 years). A total of 24 eligible patients who did not use MSmonitor constituted the control group (mean age 49.3 years, SD 11.4 years). At baseline and at 4 months, we assessed self-efficacy (Multiple Sclerosis Self-Efficacy Scale [MSSES]), participation and autonomy (Impact on Participation and Autonomy [IPA] questionnaire), and self-management (Partners In Health [PIH] questionnaire). Differences between time points and groups were tested with paired t tests and χ² tests. Results In the MSmonitor group, follow-up values remained unchanged for MSSES control (P=.19), MSSES function (P=.62), IPA limitations (P=.26), IPA problems (P=.40), PIH recognition and management of symptoms (P=.52), PIH adherence to treatment (P=.80), and PIH coping (P=.73), whereas the PIH knowledge score had improved (mean 27.8, SD 1.7 vs mean 28.7, SD 2.0; P=.02). The overall utilization rate of the program components was 83% and that of the Quick Scan was 95%. In the control group, all outcomes had remained unchanged. Conclusions The results suggest that for first-time users of the MSmonitor program and their health care providers, it may not be justified to expect a short-term improvement in empowerment in terms of self-efficacy, self-management, autonomy, or participation. Furthermore, a lack of effect on empowerment is not because of nonusage of the program components.


Author(s):  
Sajjad Saadat ◽  
Mehrdad Kalantari ◽  
Mohammad Bagher Kajbaf ◽  
Mozaffar Osseininezhad

Introdution: Multiple sclerosis is a chronic disease in the nervous system; It has many problems due to its chronic and promising nature. The treatment of this disease includes medical care and empowerment interventions for symptom management. The purpose of this study was to review the empowerment interventions in these patients. Methods: This study was conducted in a Systematic Reviewperiod from January 2000 to June 2018. On indexing sites “Magiran, PubMed, Google Scholar and Science Direct” searched the key words of Multiple Sclerosis, Chronic Disease, Quality of Life, Self-care, Self-management, Rehabilitation, Empowerment, Psychotherapy, Psychological interventions, Clinical Trials, and Randomized Clinical Trial. Out of 1855 articles found, 33 articles were selected for review. Results: The results of this study showed that empowerment interventions in people with MS can be divided into four categories of self-care, self-management, rehabilitation and psychotherapy interventions. Lack of attention to empowerment interventions in people with MS, especially in the Iran, low attention to male patients in implementing interventions, failure to consider the theoretical framework in the formulation of interventions, lack of follow-up test and non-use of virtual intervention methods (Such as using DVDs, consulting and telephone training, etc.) in Iranian studies, is one of the most respected points in previous studies. Conclusion: Empowerment studies have provided significant results in reducing symptoms and improving the quality of life of patients, which can help improve these interventions by considering some of the points.


2021 ◽  
Vol 1 (2) ◽  
pp. 308-314
Author(s):  
Geraldine Martorella

There is increasing concern regarding the risk to develop chronic pain after cardiac surgery with potential detrimental effects on recovery and quality of life. With shortened hospital stays after cardiac surgery, there needs to be more emphasis placed on self-management skills and the support provided to patients and their informal caregivers during the subacute phase. A paradigm shift needs to occur on multiple levels to prevent chronic pain and opioid misuse after surgery. Initiating this change means redefining the timing, recipients, and content and format of interventions. Several avenues can be examined and translated in practice to promote a successful transition after cardiac surgery.


2019 ◽  
Vol 19 (3) ◽  
pp. 288-296
Author(s):  
Esmaeil Mehraeen ◽  
Reza Safdari ◽  
SeyedAhmad SeyedAlinaghi ◽  
Niloofar Mohammadzadeh

Background: Appropriate mobile-based self-management strategies can be as new approaches to decelerate the HIV infection progression and improve the quality of life. This study aims at (i) identifying in the literature mobile-based self-management strategies for HIV care and (ii) prioritizing those from the point of view of infectious diseases specialists. This study provides some clues to design useful mobile-based self-management tools for HIV patients, from the point of view of practitioners. Methods: This mixed methods study was done in two main phases. In the first phase, a review was conducted in: PubMed, Web of Science, Science Direct, Scopus, and Ovid. In this manner, related studies published between 2010 and 2017 and in the English language were reviewed. In the second phase, identified mobile-based self-management strategies were scored and prioritized by 23 participants. Frequency distribution and mean reports were calculated using SPSS statistical software. Results: By detailed reviewing of 24 related articles, the HIV mobile-based self-management strategies were identified in 47 categories and subcategories. According to the findings, "enhance the quality of life" was the main self-management strategy addressed by reviewed studies. However, "antiretroviral therapy and medication adherence" was reported at a higher rate to be a more helpful strategy than "enhance the quality of life". Conclusion: In this study, helpful HIV mobile-based self-management strategies were identified that can be used to guide self-management interventions which have the potential to improve the healthcare services for people living with HIV.


Blood ◽  
2013 ◽  
Vol 122 (21) ◽  
pp. 1675-1675 ◽  
Author(s):  
Lori E Crosby ◽  
Naomi Joffe ◽  
Karen Kalinyak ◽  
Alex Bruck ◽  
Clinton H Joiner

Abstract Background Tanabe and colleagues (2010) highlighted the importance of engaging patients with Sickle Cell Disease (SCD) in disease self-management activities to improve health outcomes. Specifically, they recommended interventions that address disease self-efficacy, patient-provider communication, healthy lifestyle behaviors, future planning, and advocacy. The Stanford Chronic Disease Self-Management Program (CDSMP) is a six-week, structured intervention for adults with a chronic disease that helps them develop self-management skills in all of these areas. The CDSMP has been implemented with adults with a variety of chronic diseases (e.g., arthritis, Type II diabetes), and outcome data has shown improvements in health utilization, health status and self-management behaviors for participants six-months post participation in the CDSMP (Lorig et al. 2001). There is limited data available on the effectiveness of the CDSMP for adults with SCD, particularly young adults and adolescents. As a first step in examining the effectiveness of the CDSMP in adolescents with SCD, we conducted two CDSMP intervention groups with SCD patients 16-24 years of age. Objective The objective of the study was to assess: 1) the feasibility, acceptability and utility of the CDSMP with this population, and, 2) changes in disease self-efficacy, quality of life (QOL), and self-management behaviors from pre to 6-months after participation in the CDSMP. Methods Patients were eligible if they: 1) had a diagnosis of SCD; 2) were followed by the University of Cincinnati Health Complex or Cincinnati Children’s Hospital Medical Center (CCHMC) sickle cell clinics; 3) were between the ages of 16 -24; and, 4) had no significant cognitive limitations. Participants received a letter followed by a phone call inviting them to participate in the CDSMP and were compensated at the end of each weekly session. Results Eighteen adolescents completed the CDSMP (i.e., attended four of the six sessions) and have completed their 6-month follow-up. The majority of patients were female (56%) and had Hb SS (SS 67%; SC 28%; Sβ+Thal 5%); the mean age for participants was 19.06 (SD = 2.44). Acceptability data indicated that sessions 2 and 6 (physical activity and exercise, managing difficult emotions, working with your healthcare provider, and planning for the future) were the most beneficial. Overall participant satisfaction with the CDSMP was high, M=8.88 (SD=1.67) on a scale of 1-10 (10=totally satisfied). Qualitative comments suggest that the participants enjoyed interacting with other patients and learning skills to help manage their illness. Repeated measures ANOVAs were used to examine the QOL and disease self-efficacy data. There was not a significant improvement on PedsQL total scores over time. Patient-reported disease self-efficacy scores showed a positive trend (F(1.572, 9.432) = 3.442, P = .083). Participants reported continuing to use a number of the self-management skills/strategies they learned during the intervention such as better breathing (86.7%), problem solving (73.3%), and action planning (66.7%). Discussion Initial Results from this small pilot suggest that the CDSMP may have some promising benefits as an intervention for adolescents and young adults with SCD given its feasibility, acceptability, and potential impact on disease self-efficacy and utilization of skills learned. In addition to participants being satisfied with the content, structure, and opportunity to interact with other participants, they also reported that they continued to use the self-management skills that they had developed. Disease self-efficacy also trended upwards for participants over the course of the intervention. Although improvements in quality of life were not observed at six-months post-intervention, the small sample size likely had an impact. The next steps will be to examine these outcomes for the duration of the post-intervention period (i.e., nine and twelve-month follow-ups) to determine whether the improvements in disease self-efficacy are maintained and whether we see quality of life improving once analyses are completed with a more complete sample size. Disclosures: No relevant conflicts of interest to declare.


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