MS in focus online fatigue survey combined results

Transcription

1 MS in focus online fatigue survey combined results 1. Introduction 10,090 people from 101 countries took part in our online fatigue survey during September and October The survey was available in 11 languages and the number of respondents for each was as follows: Arabic 187 English 5,331 Farsi 81 French 198 German 2,069 Icelandic 135 Italian 122 Portuguese 298 Russian 101 Spanish 1,391 Swedish Methodological constraints The survey was conducted online, so responses were only gathered from those with Internet access. It was also self-reporting, with people rating their own experiences.

2 Number of people (N=10,074) 3. Results and discussion 3.1 When asked how long they had had MS, the majority said between two and ten How long have you had MS? Up to More than 20 Number of % of respondents said that fatigue was one of their three main symptoms, confirming that it is a very common symptom for people with MS. Would you say fatigue is one of your three main symptoms? No 14% 86% N=10,090 This result supports the need for further research into the treatment and management of this particular symptom. Arms, legs, my entire body feels weighed down with lead. Overwhelming, constant, debilitating, identity destroying. My brain won't work and my legs feel heavy Fatigue is my worse symptom. The rest, I can deal with. But being so exhausted all the time is what brings me down.

3 Combined total 3.3 When asked about when fatigue affected them the most, more than a third of people said it comes and goes throughout the day and night, while 16% said all the time. When does fatigue affect you most? Morning 7% It comes and goes throughout the day/night 36% Afternoon 26% N=10,090 All the time 16% Evening 13% Night time 2% These results highlight the fluctuating nature of fatigue in MS and suggest that this symptom can have a significant impact on day-to-day life, for example, the ability to maintain regular work hours or family responsibilities. I can't explain why I feel so exhausted from not doing anything, but I do. I am lifeless at times, like someone has switched me off. I get up in the morning feeling just as tired as the night before. Fatigue sneaks up on me. I'm fine one moment, then NEED to lie down immediately. 3.4 Respondents were asked to rate how much fatigue affected eight different life areas (from 1=no impact to 5=extreme impact). For work and leisure/hobbies, the majority ranked the impact of fatigue as 5. Other life areas (home life, social life, sexual life, mental health and physical health) had a majority ranking of 4, while family life had a 3. When combined together, the results show a peak at a ranking of The impact of MS fatigue on combined life areas low impact fair impact medium impact high impact extreme impact

4 I was diagnosed when I was 14 old. I'm now 15. All my friends stay up late at night and I physically can t do it, I just get too tired. Fatigue is my most serious and debilitating symptom. It prevents me from maintaining employment and keeping up with my household responsibilities. These results show that for the majority of people with fatigue, this symptom has a medium-toextreme impact on all areas of life. This was confirmed by respondents rating the overall impact of fatigue on their life as either high (46%) or medium (43%). Overall, how would you rate the impact of fatigue on your daily life? High 46% Mild 11% Medium 43% It affects everything, but I prioritise my limited energy to work and family. It is incredibly frustrating. I feel that I am missing out on my life mostly due to the fatigue. I've come to realise that it is there and I've learned to cope with it. I still don't like having it, but I've accepted the fact that it is there and will continue to be a part of my life. 3.5 When asked if they slept through the night, the results showed a spread of responses. Do you sleep through the night? Never 18% 21% Some nights 28% Most nights 33%

5 3.6 Many also recognised the impact of fatigue on those around them, with more than half saying that their family, friends or colleagues were impacted by their fatigue. Does your fatigue have an impact on your partner, family or colleagues? Unsure 29% No 18% 53% There is tension between my partner and I because I am too weak to participate in anything. All of my energy is consumed by work and the things that I MUST do. My children start to not count on me and feel they must do things on their own. Our lives get split up. I can be a bit grumpy when I m tired. I believe it impacts my kids I can t keep up with them and sometimes tell them that we can t do the things they want because I m tired. I am sure at night time my husband would love to spend time with me but I really just want to sleep. Before I finally quit due to my symptoms, my co-workers were all covering part of my job to make it easier on me. It was difficult to see them take on my responsibilities and be unable to step up myself. Fatigue prevents me from working full time or being able to be the wife, mother and daughter I want to be % said that their fatigue worsened with heat (or when they overheated), highlighting the importance of identifying and using strategies that help in managing fatigue caused or worsened by increased body temperature. This issue was particularly strong for people who took part in the Arabic and Farsi language versions of the survey, where 92.8% said heat worsened their fatigue, and also for people who did the Italian, Portuguese and Spanish surveys, with 90% saying heat made their fatigue worse. For language versions from the cooler countries German, Icelandic, Russian and Swedish heat still made fatigue worse for the majority (74.6%), but it was not as high. 3.8 The majority of respondents (62%) had not used medication, complementary therapies, rehabilitation or exercise for managing fatigue.

6 Do you use, or have you used, any medication or therapies for MS fatigue? No 62% 38% Of those who did, complementary therapies and rehabilitation were reported to be unhelpful in improving fatigue while exercise and medication were reported to be reasonably helpful. 3.9 Other methods or coping strategies (such as resting/napping, scheduling their day around their fatigue times, keeping cool, healthy eating) were used by 45% of respondents. I rest in the afternoon, lying on the bed reading to give my legs a break. I try to plan my day to be as efficient as possible. I ask others in the household to assist with chores that I know will be particularly tiring for me in order to conserve energy. I pay attention to what my body is telling me as far as fatigue and I know my limitations and head it off before it gets worse. It goes only with rest. A couple of short naps help. It s taken a long time to discover how to manage it, and I m still learning. It would be interesting to investigate why less than half of respondents use a coping strategy, for example if this is because the conditions for these do not exist (such as absence of a place to rest at work), attitude of those in the environment or a lack of advice Nearly half of respondents did not feel that the people around them understood the effect of MS fatigue. However, when asked specifically about their healthcare professionals, 37% reported that fatigue was well understood and 44% reported that at least some of the professionals involved in their care had some understanding of the impact of fatigue Perceived understanding of the effect of MS fatigue General population Healthcare professionals 0 Some No

7 When I was working, my Board of Directors got me a pull-out bed, a pillow and a blanket to take naps throughout the day. Up to that point, I didn t think that they were aware of my extreme fatigue. People do not understand how a person can be fine one minute and exhausted the next When asked about the availability of information about fatigue in MS, 79% said it was either easy (22%) to find or average (57%), which is promising for people with this symptom. How would you rate the availability of information about fatigue in MS? Hard to find 21% Easy to find 22% Average 57% My local MS society has really good information about day-to-day management of fatigue, but not so much about why it occurs. 4. Conclusions and Recommendations The results of the survey show that fatigue is a very common symptom of MS, that it is difficult to treat, and that it has a high impact on most areas of life. Many respondents felt that people around them do not understand fatigue. To support people with MS fatigue to continue the activities of their day-to-day lives and to contribute to their communities, there needs to be: Increased understanding of the effect of fatigue from family, colleagues and friends Further understanding of the effect of fatigue from healthcare professionals Increased research into treatments and therapies that work for MS fatigue Accessible information about how to keep cool in hot conditions Information and advice about day-to-day energy management and scheduling regular rests Somewhere to rest or sleep at the workplace to allow employment to continue