Digitizing a Face-to-Face Group Fatigue Management Program: Exploring the Views of People With Multiple Sclerosis and Health Care Professionals Via Consultation Groups and Interviews.

BACKGROUND: Fatigue is one of the most common and debilitating symptoms of multiple sclerosis (MS) and is the main reason why people with MS stop working early. The MS Society in the United Kingdom funded a randomized controlled trial of FACETS-a face-to-face group-based fatigue management program for people with multiple sclerosis (pwMS)-developed by members of the research team. Given the favorable trial results and to help with implementation, the MS Society supported the design and printing of the FACETS manual and materials and the national delivery of FACETS training courses (designed by the research team) for health care professionals (HCPs). By 2015 more than 1500 pwMS had received the FACETS program, but it is not available in all areas and a face-to-face format may not be suitable for, or appeal to, everyone. For these reasons, the MS Society funded a consultation to explore an alternative Web-based model of service delivery. OBJECTIVE: The aim of this study was to gather views about a Web-based model of service delivery from HCPs who had delivered FACETS and from pwMS who had attended FACETS. METHODS: Telephone consultations were undertaken with FACETS-trained HCPs who had experience of delivering FACETS (n=8). Three face-to-face consultation groups were held with pwMS who had attended the FACETS program: London (n=4), Liverpool (n=4), and Bristol (n=7). The interviews and consultation groups were digitally recorded and transcribed. A thematic analysis was undertaken to identify key themes. Toward the end of the study, a roundtable meeting was held to discuss outcomes from the consultation with representatives from the MS Society, HCPs, and pwMS. RESULTS: Key challenges and opportunities of designing and delivering an integrated Web-based version of FACETS and maintaining user engagement were identified across 7 themes (delivery, online delivery, design, group, engagement, interactivity, and HCP relationships). Particularly of interest were themes related to replicating the group dynamics and the lack of high-quality solutions that would support the FACETS' weekly homework tasks and symptom monitoring and management. CONCLUSIONS: A minimum viable Web-based version of FACETS was suggested as the best starting point for a phased implementation, enabling a solution that could then be added to over time. It was also proposed that a separate study should look to create a free stand-alone digital toolkit focusing on the homework elements of FACETS. This study has commenced with a first version of the toolkit in development involving pwMS throughout the design and build stages to ensure a user-centered solution.

The sink or SWIM hypothesis; a roadmap from pathology to work instability.

PURPOSE: Selecting the most appropriate health-related work outcome to evaluate an intervention can be fraught with difficulty. To aid clinicians in navigating this problem we have developed a model, which illustrates how pathology can affect specific measureable quantities, such as work instability. METHODS: Using a modified-Delphi procedure, a panel of experts met initially to analyze the content of 95 health-related work outcome measures and organize the identified areas of measurement into a coherent model, complemented by a narrative review of the literature. This initial model underwent two rounds of stakeholder-based feedback, the results of which were incorporated in the final expert panel meeting to produce the States-traits Work Instability Model (SWIM). RESULTS: The States-traits Work Instability Model (SWIM) illustrates how changes to an individual's physical and psychological states and traits might affect their work-related performance, well-being and self-efficacy. Moreover, each concept utilized in the model was specifically selected as it represents a measurable quantity, for which there are tools available. CONCLUSION: The SWIM is arguably the first holistic model of work that is based on both the clinical realities of vocational rehabilitation, sociological research, and is born from analyzing the basis of practical measurements. Implications for Rehabilitation Work Instability • Work instability has multiple causes many of which are amenable to intervention • The model clarifies the measureable domains of vocational rehabilitation interventions, which is of particular benefit for services working with people with disability at work who are struggling to remain in work • The model conceptualizes how the potential areas for intervention may be related based on evidence available in the literature.

Systematic Review of Health-Related Work Outcome Measures and Quality Criteria-Based Evaluations of Their Psychometric Properties.

OBJECTIVE: To examine the state of psychometric validation in the health-related work outcome literature. DATA SOURCES: We searched PubMed, PubMed Central, CINAHL, Embase (plus Embase Classic), and PsycINFO from inception to January 2016 using the following search terms: stroke, multiple sclerosis, epilepsy, spinal cord injury, brain injury, musculoskeletal disease, work, absenteeism, presenteeism, occupation, employment, job, outcome measure, assessment, work capacity evaluation, scale, and questionnaire. STUDY SELECTION: From the 22,676 retrieved abstracts, 597 outcome measures were identified. Inclusion was based on content analysis. There were 95 health-related work outcome measures retained; of these, 2 were treated as outliers and therefore are discussed separately. All 6 authors individually organized the 93 remaining scales based on their content. DATA EXTRACTION: A follow-up search using the same sources, and time period, with the name of the outcome measures and the terms psychometric, reliability, validity, and responsiveness, identified 263 unique classical test theory psychometric property datasets for the 93 tools. An assessment criterion for psychometric properties was applied to each article, and where consensus was not achieved, the rating delivered by most of the assessors was reported. DATA SYNTHESIS: Of the articles reported, 18 reporting psychometric data were not accessible and therefore could not be assessed. There were 39 that scored <20% of the maximum achievable score, 106 scored between 20% and 40%, 82 scored between 40% and 60%, 15 scored between 60% and 80%, and only 1 scored >80%. The 3 outcome measures associated with the highest scoring datasets were the Sheehan Disability Scale, the Fear Avoidance Beliefs Questionnaire, and the assessment of the Subjective Handicap of Epilepsy. Finally, only 2 psychometric validation datasets reported the complete set of baseline psychometric properties. CONCLUSIONS: This systematic review highlights the current limitations of the health-related work outcome measure literature, including the limited number of robust tools available.

The experience of transitioning from relapsing remitting to secondary progressive multiple sclerosis: views of patients and health professionals.

PURPOSE: The majority of people with multiple sclerosis (pwMS) initially present with discreet periods of relapses followed by partial remission of symptoms (RRMS). Over time, most pwMS transition to secondary progressive MS (SPMS), characterized by a gradual accumulation of disability. This study aimed to explore the experiences, coping and needs associated with transitioning from RRMS to SPMS. METHOD: Data were collected via semi-structured interviews with nine pwMS and seven specialist MS health professionals (HPs). Thematic analysis was used to analyze the data. RESULTS: Four major themes were identified: "Is this really happening?"; "Becoming a reality"; "A life of struggle"; and "Brushing oneself off and moving on." Findings suggested a process of moving from uncertainty towards confirmation of one's diagnostic label. Being reclassified with SPMS served as a turning point for many, and was accompanied by a range of cognitive, emotional and behavioral responses. The value of adequate information and support surrounding the transition, and the potential benefit of education and support for health professionals in relation to the transition were indicated. CONCLUSIONS: Understanding pwMS' experiences of the transition is essential if clinicians are to provide pwMS with appropriate support during the transition. Implications for Rehabilitation The timing and delivery of preparatory education for patients about the transition to SPMS should be carefully considered. Sufficient information and follow-up support following the reclassification of SPMS is crucial but sometimes lacking. The importance of sensitive communication of the reclassification of SPMS was highlighted. MS Specialist health professionals may potentially benefit from training and support around communication of the reclassification of SPMS. Given the potential negative psychological impact of the transition, the psychological wellbeing of the patients during the transition to SPMS should be monitored and responded to appropriately.

Managing fatigue in adults with multiple sclerosis.

Fatigue is one of the most common symptoms experienced by people with multiple sclerosis (MS) and has a significant effect on all aspects of daily living and on quality of life. It is important for healthcare professionals working with patients with MS to identify fatigue where present and to be able to offer clinically effective treatment options. This article explores assessment and measurement of fatigue, evidence-based pharmacological and non-pharmacological treatments for managing fatigue and the role of MS specialist nurses and therapists.