Fatigue is one of the most commonly reported and debilitating symptoms of multiple sclerosis (MS) and can significantly reduce an individual's quality of life. Unlike the tiredness that we all experience sometimes, fatigue in those with MS can have a hugely negative impact - it can limit or stop people from doing day-to-day activities and things that really matter to them. It is the main reason why people with MS stop working. Research undertaken at Bournemouth University (BU) has been tackling the challenge of managing fatigue in people with MS, with encouraging results.
Dr Sarah Thomas, Professor Peter Thomas and colleagues from the BU Clinical Research Unit, along with collaborators from the Dorset MS Service at Poole Hospital, have developed a group-based fatigue management programme for people with MS called FACETS (Fatigue: Applying Cognitive behavioural and Energy effectiveness Techniques to lifeStyle). This programme combines providing people with tools and strategies to manage their energy levels more effectively and supporting them to explore different, more helpful ways of thinking about fatigue.
The programme is delivered via a series of weekly group sessions, facilitated by two health professionals who have experience of cognitive behavioural approaches and of working with people with MS. The sessions are highly structured and incorporate a combination of learning techniques, including presentations, group discussions, flipchart exercises and tasks to do at home.
FACETS has been evaluated in an MS Society funded trial led by Professor Thomas with collaborators from Poole, Bristol, and Southampton. Participants were randomised into two groups; one of which attended theFACETS programme in addition to usual care, and one of which continued with their routine care. The results showed that the FACETS group demonstrated improvements in fatigue severity and self-efficacy at a four-month follow-up. A year on from the beginning of the trial, improvements were still sustained and additional improvements in quality of life were even emerging.
Given the progressive nature of MS, the debilitating nature of fatigue, and the lack of effective fatigue drug treatments that work for the majority, such findings are encouraging and important. People who attended the FACETS programme gave feedback after each session and these ratings indicated high overall satisfaction: "It was very helpful to me. I learned a lot and it has made my life so much easier. I would recommend it to anyone."
For the research team, one of the most rewarding aspects of carrying out their work has been seeing it rolled out in to practice and improving the quality of life for people with MS. The UK MS Society has developed the research into one-day training courses for health professionals, who are then able to apply their new knowledge to support people with MS in their local areas. Alison Nock and Vicky Slingsby, both occupational therapists, have been delivering the training. To date, over 150 health professionals have been trained across the UK, and the course has been very positively received. One attendee commented: "The course was fantastic - best training I have had in a very long time."
Not only has the research been of benefit to people with MS, it has also inspired a number of other research projects across Europe. A French research team based at the Université Paris Ouest Nanterre La Défense are looking to develop booster sessions for the FACETS programme, which will be particularly useful given the unpredictable and progressive nature of MS. Other researchers in Norway and Germany are also undertaking work to adapt the FACETS programme for different clinical settings and healthcare systems.