One year follow-up of a pragmatic multi-centre randomised controlled trial of a group-based fatigue management programme (FACETS) for people with multiple sclerosis (original) (raw)
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BMC Neurology, 2010
Background: Fatigue is one of the most commonly reported and debilitating symptoms of multiple sclerosis (MS); approximately two-thirds of people with MS consider it to be one of their three most troubling symptoms. It may limit or prevent participation in everyday activities, work, leisure, and social pursuits, reduce psychological well-being and is one of the key precipitants of early retirement. Energy effectiveness approaches have been shown to be effective in reducing MS-fatigue, increasing self-efficacy and improving quality of life. Cognitive behavioural approaches have been found to be effective for managing fatigue in other conditions, such as chronic fatigue syndrome, and more recently, in MS. The aim of this pragmatic trial is to evaluate the clinical and cost-effectiveness of a recently developed group-based fatigue management intervention (that blends cognitive behavioural and energy effectiveness approaches) compared with current local practice.
Evaluation of a Fatigue Self-Management Program for People with Multiple Sclerosis
International Journal of MS Care, 2016
Background: Fatigue is one of the most common and debilitating symptoms of multiple sclerosis (MS). The program “Minimise Fatigue, Maximise Life: Creating Balance with Multiple Sclerosis” (MFML) was created in New Zealand because of the lack of a fatigue management program for people with MS in that country. This program aims to empower individuals with MS to manage their own symptoms of fatigue. The objective of this study was to evaluate the MFML fatigue self-management program. Methods: Self-report questionnaires were used to measure impact of fatigue (5-item Modified Fatigue Impact Scale), self-efficacy (MS Self-efficacy Scale), and quality of life (12-item Short Form Health Status Survey [SF-12]) 1 month before (T1), at commencement of (T2) (to investigate the stability of questionnaire scores before the intervention), and at the end of (T3) the 6-week group-based program. Increased self-efficacy and quality of life scores and a decrease in reported impact of fatigue were the a...
The “Managing Fatigue” programme – experiences shared by MS participants
Scandinavian Journal of Occupational Therapy
Background: The "Managing Fatigue" (MF) programme can help people living with Multiple sclerosis (MS) manage fatigue in their everyday lives. The programme has been proven feasible with Swedish occupational therapists, but there is a lack of knowledge of how MS participants experience the programme, and what they learned from participating in the programme. Aim: To describe how Swedish MS participants experience the content and structure of the Swedish MF programme, as well as what they learned from participating in the programme. Material and Methods: Qualitative interviews were performed with nine MS participants, and data were analysed according to direct content analysis. Results: Participants experienced programme material was relevant, and they valued the structured sessions that utilised different teaching forms. Participants described the group format and the experienced course leader nurtured their learning process. They learned occupational skills to save energy, to re-value daily occupations, and initiated a process of change, but individual support is needed after programme completion. Conclusion and Significance: Findings support programme feasibility among MS participants, and show the importance of being able to practice skills to handle fatigue in everyday life. Future studies should consider adding outcome measures focussing on engagement in occupations when evaluating programme effectiveness.
Physical Therapy Reviews, 2017
Background: Fatigue in multiple sclerosis (MS) is what most interferes with usual activities such as self-care, childcare , work and community engagement and contributes to disability and depression. Fatigue intensifies the other symptoms of MS, thereby making everyday life more challenging. Self-management or cognitive behavioural approaches and programmes are argued to be effective for managing fatigue in MS. However, there was no such manualised or accessible approach available for people with MS in New Zealand (NZ). Objectives: This report outlines how people with MS in NZ were included, via Participatory Action Research (PAR), in the development of the fatigue self-management programme 'Minimise Fatigue, Maximise Life' (MFML), so that it had relevance and meaning to them. It also discusses the theories drawn on for developing the programme, and presents considerations for the programme for use in NZ and elsewhere. Major findings: Use of PAR facilitated a positive experience for people with MS, the end users of the programme. It enabled the principles of self-efficacy, self-management, and self-determination to underpin the programme via the sharing of knowledge through their partnership with healthcare professionals. However, the research undertaken to date suggests the need for more consideration of ways to support attendees to maintain behaviour change over time. Conclusions: PAR was a useful approach for developing the fatigue self-management programme. Future development of the programme could entail use of online technology to deliver the programme. Consideration for supporting ongoing behaviour change is required. Adaptation of the programme has potential for use with people with long-term conditions other than MS.
Randomised controlled trial of a self-guided online fatigue intervention in multiple sclerosis
Journal of Neurology, Neurosurgery & Psychiatry, 2018
ObjectiveFatigue is a major disabling symptom in many chronic diseases including multiple sclerosis (MS), but treatment options are limited.Here, we tested the effectiveness of a self-guided , interactive, online fatigue management programme (ELEVIDA) based on principles of cognitive behavioural therapy (CBT) and related psychotherapeutic approaches (eg, mindfulness) for reducing fatigue in MS.MethodsPatients with MS and self-reported fatigue were recruited via the website of the German MS Society and assigned via an automated randomisation generator (1:1, no blocking or stratification) to a 12-week online intervention (ELEVIDA, n=139, 82% female, mean age 40.8, median patient determined disease steps (PDDS) 3.0) or a waitlist control group (n=136, 79% female, mean age 41.9, median PDDS 3.0). The primary outcome was the Chalder Fatigue Scale. Outcomes were assessed at baseline, at week 12 (postintervention) and at follow-up (week 24).ResultsCompared with the control group, significa...
Perceived Impact of a Self-Management Program for Fatigue in Multiple Sclerosis
International Journal of MS Care, 2016
Background: Fatigue in multiple sclerosis (MS) is reported to be one of its most debilitating symptoms, affecting personal, family, and community participation. Despite a high incidence of MS in New Zealand, there was no cohesive approach to support people with MS to manage their fatigue. This prompted the development of Minimise Fatigue, Maximise Life: Creating Balance with Multiple Sclerosis (MFML), a group-based, 6-week fatigue self-management program. This study explored the perceived impact of MFML for participants who attended the program. Methods: We undertook semistructured individual telephone interviews 1 (n = 23) and 3 (n = 11) months after delivery of the program. Data were analyzed for themes. Results: Two themes emerged from the data: achieving behavior change to manage fatigue and whole of life effects. These themes represent participants' perceived benefits of the program. Conclusions: This study provides evidence that the MFML fatigue self-management program pos...
International Journal of MS Care, 2016
Background: Multiple sclerosis (MS) is an inflammatory and neurodegenerative disease of the central nervous system. Fatigue is a common and disabling symptom, often causing decreased quality of life, social withdrawal, and unemployment. We developed and studied the feasibility of a cognitive-behavioral group intervention to manage fatigue in MS. We aimed to integrate the concepts of cognitive-behavioral therapy and evidence-based patient information. Methods: We conducted patient interviews and a focus group to assess patients' interest in and need for fatigue self-management training and developed the program accordingly. The program consists of six 90-minute modules, which were structured with the use of moderation cards, helping to guarantee treatment fidelity. The program was tested on three pilot groups (N = 16) in a rehabilitation center. Fatigue, depression, and coping self-efficacy were assessed at baseline and after the intervention. Acceptance and general satisfaction ...
2020
Introduction Multiple sclerosis (MS) is an immune-mediated disease of the central nervous system. It is considered a major cause of non‐traumatic disability in young adults. One of the most common and disabling symptoms of MS is fatigue. MS fatigue can impact all aspects of quality of life, including physical, mental and social function. Fortunately, fatigue self-management interventions, such as ‘Managing Fatigue: A 6 week energy conservation course’, can decrease the impact of fatigue and improve health-related quality of life. The purpose of this study is to compare three modes of delivering the Managing Fatigue intervention—two remote delivery formats (teleconference and internet) and one in-person format—on perceptions of fatigue and its impact on physical, mental and social function. Methods and analysis A non-inferiority randomised clinical trial is being conducted to compare the three delivery formats (1:1:1 allocation ratio) among 582 participants with MS living in the Midw...
Multiple sclerosis (Houndmills, Basingstoke, England), 2017
Fatigue is a common symptom in multiple sclerosis (MS) and often restricts societal participation. Cognitive behavioral therapy (CBT) may alleviate MS-related fatigue, but evidence in literature is inconclusive. To evaluate the effectiveness of CBT to improve MS-related fatigue and participation. In a multi-center, assessor-masked, randomized controlled trial, participants with severe MS-related fatigue were assigned to CBT or control treatment. CBT consisted of 12 individual sessions with a psychologist trained in CBT, the control treatment consisted of three consultations with a MS nurse, both delivered over 16 weeks. Assessments were at baseline, 8, 16 (i.e. post-intervention), 26, and 52 weeks post-baseline. Primary outcomes were the Checklist Individual Strength-fatigue subscale (CIS20r fatigue) and the Impact on Participation and Autonomy questionnaire (IPA). Data were analyzed according to the intention-to-treat principle, using mixed-model analysis. Between 2011 and 2014, 91...