Interim report: Development and evaluation of a three-week inpatient fatigue management education protocol for persons with MS-related fatigue

Hersche Cupelli, Ruth and Weise, Andrea and Barbero, Marco and Kool, Jan (2017) Interim report: Development and evaluation of a three-week inpatient fatigue management education protocol for persons with MS-related fatigue. Project Report (Unpublished)

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Background Fatigue is one of the most common symptoms of multiple sclerosis (MS) reported by patients (between 50% and 92%; Krupp 2006, Weiland et al. 2015). The Multiple Sclerosis Council (1998) defines fatigue as “a subjective lack of physical and/or mental energy that is perceived by the individual or caregiver to interfere with usual and desired activities”. Fatigue limits the ability to participate in everyday activities, work, leisure and social participation and is considered to be one of the main causes of impaired quality of life among persons with multiple sclerosis (pwMS) independent from depression or disability (Jackson et al. 1991). Primary fatigue refers to fatigue in absence of an apparent cause and it is specific of MS whereas secondary fatigue is a consequence of other concomitant conditions (e.g. psychological disturbances, musculoskeletal problems, sleep disorders and medication side effects), which may be related to MS but also to other diseases. The pathophysiology of primary fatigue in MS is highly complex and, so far, not completely understood. To date, the best therapeutic approach seems to be a multidisciplinary management involving exercise therapy, self-management and education in conjunction with medication (Rottoli et al., 2016, Kos et al., 2016). Two meta-analyses provide moderate to strong evidence for fatigue management education (or energy management education) based on energy conservation strategies and cognitive behavioural therapy to reduce the impact of fatigue on occupational performance and quality of life (Asano et al., 2014, Blikman et al., 2013). The treatment protocols used in these clinical trials (Vanage et al. 2003, Sauter et al. 2008, Mathiowetz et al. 2005, Finlayson et al. 2011, Hugos et al. 2010, Kos et al. 2007) are all based on the 6-week group-based program developed by Packer et al. (1995), carried out in outpatient setting and delivered by trained occupational therapists. The typical features of this program are stable groups with 6-12 participants, hierarchical construction of the issues, 4-6 group sessions (±2h x week, total 12 hours) and homework between the group sessions to apply the energy conservation strategies and to implement a behavioural change. At the moment the evidence for in inpatient settings (Wendebourg et al. 2016, Van Kessel K. et al., 2008) or individual treatments (Kos et al., 2016) with the same issues are inconclusive due to the small sample size. Despite good evidence for fatigue management education programs, their limited external validity has prevented the implementation of these treatment protocols in Switzerland and other European countries. They are currently not available for pwMS in these countries. The main reasons are the absence of locally specialized OTs and no translated and culturally adapted treatment programs as well as a miss match between the organisational needs of the regional healthcare organizations and the treatment protocols. In Switzerland multidisciplinary rehabilitation for pwMS is delivered mostly in specialized rehabilitation centres, where pwMS spend three to four weeks as inpatients yearly or biennially. During the rest of the year, pwMS maintain their normal busy life which often includes (part-time) paid and/or family work. At best, they receive physiotherapy in the meantime, but they have no access to specialized OTs due to time, energy and availability constraints. Until now, no program has focused on treating inpatients in dynamic group compositions over a shorter period (three weeks) but with higher frequency and has allowed participants to stream into the group continuously whenever being admitted which is necessary for successful implementation in the rehabilitation context. Information is missing whether such treatment characteristics are feasible in the inpatient setting and how these would be perceived by pwMS. Project aims The project is divided into two distinct parts. The aim of Part 1 was the development of an evidence based energy management education (EME) treatment protocol in German and a training concept in using EME for occupational therapists, followed by a test run with 10-15 pwMS and 3 OTs, evaluation of the experiences and optimization of the treatment protocol and the training protocol of OTs. Additionally, a feasibility study for the evaluation of the efficacy of EME was prepared. The aim of Part 2 is to evaluate the feasibility of a randomized controlled trial (RCT) for EME in terms of processes, procedures, resource management and scientific metrics by a pilot-run with 40 pwMS. After the validation of the treatment protocol low-threshold courses for occupational therapist will be provided to facilitate a broad implementation so as to assure the availability for many pwMS. Project partners and finances This project is a cooperation of the Stiftung Kliniken Valens with the Rehabilitation Research Laboratory 2rLab of the University of Applied Sciences (SUPSI) in Manno. Part 1 was partly financed by the Swiss Occupational Therapy Association and the “Stiftung Ergotherapie Zürich”. Part 2 is partly financed by the Swiss MS-Association. The execution of this project is enabled by SUPSI and Kliniken Valens.

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