Effectiveness of Fatigue Management Interventions in Reducing Severity and Impact of Fatigue in People with Progressive Multiple Sclerosis: A Systematic Review.

BACKGROUND: Rehabilitation interventions are recommended to manage multiple sclerosis (MS)-related fatigue. However, existing research has largely been generalized to those with relapsing-remitting MS, making it difficult to determine the effectiveness of these interventions in people with progressive MS. Therefore, this study aimed to systematically review the evidence related to the effectiveness of fatigue management interventions in reducing the severity and impact of fatigue in people with progressive MS. METHODS: Six electronic databases (CINAHL, Cochrane Library, MEDLINE, PEDro, ProQuest, and Web of Science Core Collections) were searched for relevant articles up until November 2017. Randomized controlled trials and quasi-experimental studies that examined the effects of exercise, behavioral interventions, and rehabilitation on fatigue in people with progressive MS using self-reported fatigue outcome measures were included in this review. RESULTS: Eight exercise, two rehabilitation, and two behavioral interventions were investigated in the 13 articles included in this review. Heterogeneous effects were reported between studies, with only two exercise, one behavioral, and two rehabilitation interventions recording significant improvements in postintervention fatigue severity or impact. However, most studies were underpowered, only two used fatigue as the primary outcome, and only one specifically recruited participants with predefined levels of fatigue. CONCLUSIONS: Evidence from this review is inconclusive regarding the effectiveness of nonpharmacologic interventions in reducing the severity and impact of fatigue in progressive MS populations. Adequately powered randomized controlled trials are required to evaluate fatigue management interventions in people with progressive MS experiencing high levels of fatigue and using fatigue as the primary outcome.

Prevalence of fatigue and its association with clinical features in progressive and non-progressive forms of Multiple Sclerosis.

BACKGROUND: Fatigue is a complex and disabling symptom of Multiple Sclerosis (MS); however, there is conflicting evidence of the relationship between fatigue and clinical features of MS. Furthermore, few studies have considered these relationships specifically in a progressive MS population. AIMS: (1) estimate the prevalence of self-reported fatigue in people with MS; (2) evaluate the relationship between fatigue severity/impact and clinical features of MS; (3) compare the prevalence of fatigue, and the strength of relationship between fatigue severity/impact and clinical features of MS in progressive and non-progressive forms of MS. METHODS: An online survey was conducted to measure the severity (Fatigue Severity Scale (FSS)) and impact of self-reported fatigue (Modified Fatigue Impact Scale) in people with MS. The survey also contained questionnaires related to disability, quality of life, MS impact, anxiety and depression, cognition, and sleep quality. RESULTS: 412 people responded to the survey, of which 68.7% reported having fatigue (FSS ≥ 5). The prevalence of fatigue was significantly higher in participants with progressive MS (81%) in comparison to those with non-progressive forms of MS (64%, p = 0.01). Fatigue severity and impact were associated with quality of life, MS impact, anxiety, depression, cognition, and sleep quality in both progressive and non-progressive MS populations (p < 0.05). However, fatigue severity (r = 0.335) and impact (r = 0.391) were correlated with disability only in participants with non-progressive MS. CONCLUSION: Fatigue was more prevalent amongst participants with progressive MS. In addition, higher fatigue severity and impact were associated with greater physical, cognitive, and psychological impairment, although the strength of association between these outcomes was generally similar regardless of the type of MS.

Bringing Value-Based Perspectives to Care: Including Patient and Family Members in Decision-Making Processes.

BACKGROUND: Recent evidence shows that patient engagement is an important strategy in achieving a high performing healthcare system. While there is considerable evidence of implementation initiatives in direct care context, there is limited investigation of implementation initiatives in decision-making context as it relates to program planning, service delivery and developing policies. Research has also shown a gap in consistent application of system-level strategies that can effectively translate organizational policies around patient and family engagement into practice. METHODS: The broad objective of this initiative was to develop a system-level implementation strategy to include patient and family advisors (PFAs) at decision-making points in primary healthcare (PHC) based on wellestablished evidence and literature. In this opportunity sponsored by the Canadian Foundation for Healthcare Improvement (CFHI) a co-design methodology, also well-established was applied in identifying and developing a suitable implementation strategy to engage PFAs as members of quality teams in PHC. Diabetes management centres (DMCs) was selected as the pilot site to develop the strategy. Key steps in the process included review of evidence, review of the current state in PHC through engagement of key stakeholders and a co-design approach. RESULTS: The project team included a diverse representation of members from the PHC system including patient advisors, DMC team members, system leads, providers, Public Engagement team members and CFHI improvement coaches. Key outcomes of this 18-month long initiative included development of a working definition of patient and family engagement, development of a Patient and Family Engagement Resource Guide and evaluation of the resource guide. CONCLUSION: This novel initiative provided us an opportunity to develop a supportive system-wide implementation plan and a strategy to include PFAs in decision-making processes in PHC. The well-established co-design methodology further allowed us to include value-based (customer driven quality and experience of care) perspectives of several important stakeholders including patient advisors. The next step will be to implement the strategy within DMCs, spread the strategy PHC, both locally and provincially with a focus on sustainability.

The search for pain relief in people with chronic fatigue syndrome: a descriptive study.

The purpose of this study was to investigate the use and perceived benefit of complimentary and alternative medicine (CAM) and physiotherapy treatments tried by people with chronic fatigue syndrome (CFS) to ease painful symptoms. This study used a descriptive, cross-sectional design. People with CFS who experienced pain were recruited to this study. Participants were asked during a semistructured interview about the treatments they had tried to relieve their pain. Each interview was conducted in the home of the participant. Fifty participants were recruited, of which, 10 participants were severely disabled by CFS. Eighteen participants were trying different forms of CAM treatment for pain relief at the time of assessment. Three participants were currently receiving physiotherapy. Throughout the duration of their illness 45 participants reported trying 19 different CAM treatments in the search for pain relief. Acupuncture was reported to provide the most pain relief (n=16). Twenty-seven participants reported a total of 16 different interventions prescribed by their physiotherapist. The results of this study suggest some physiotherapy and CAM treatments may help people manage painful CFS symptoms. Future research should be directed to evaluating the effectiveness of interventions such as acupuncture or gentle soft tissue therapies to reduce pain in people with CFS.