Fatigue in axial SpA - "feeling drunk with tiredness"

January 2020: If I ask you to describe the overall level of fatigue/tiredness that you have experienced over the past week and to rate it between 0 –10, how would you answer this, and would you be satisfied with your response?  We have been asking our patients to score in this way for over 20 years and in my clinical world I have been using this as a separate item on my outcome sheet for a long time. I justify this as it gives me a starting point to have a conversation about fatigue, but I had no idea about the impact of fatigue on the lives of patients, or the frustrations that lay beneath.

I am indulging myself in sharing a story of how this is changing and about exciting prospects for the future for both our patients and ourselves as clinicians.  This story begins with an invitation, several years ago, to give a talk about fatigue with Dr Kirstie Haywood from Warwick Medical School on the NASS Members Day, which was held at Birmingham City Football Club.  Anyone who knows Kirstie may immediately realise that she was going to concentrate on measurement and I got the interventions.  Neither of us knew a lot about fatigue, but we soon realised that if we didn’t know what the impact of fatigue was having on people’s lives… then how could we begin to measure it, let alone treat it? Thus began our journey to try to explore this and Kirstie came to meet my Patient and Public Involvement (PPI) in Research Group at Wrightington Wigan and Leigh NHS Foundation Trust (WWL). At WWL we are striving to involve the public in research that we believe should be carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them

As a consequence of this initial meeting, our PPI group became patient partners for a grant application to fund a study to understand the experience and impact of fatigue in axial SpA and what is important for us to ask about to measure it. We have continued to work in collaboration with Warwick Medical School and the Staffordshire Rheumatology Centre (Dr Jon Packham) ever since. After two unsuccessful grant applications, our third was successful and funded by NASS to find out more about improving the way in which fatigue is assessed and to also raise awareness of the wide-ranging impact that this has on people’s lives.  Little was known about the fatigue associated with axial SpA and what really matters to patients in terms of ‘good outcomes’ from healthcare. Two key questions that we asked were: what is fatigue in axial SpA and how can we measure it?

The entire research team who are named in the references below were extremely fortunate to have been able to guide our PhD student (Nathan Pearson) to complete this study with us. One of the reasons for telling this story is to highlight how a PPI group have been so instrumental and important for the success of this study. They have been influential in helping Nathan to formulate his next steps, anchored us down, told us what is important for patients, translated researcher speak into understandable language, helped to check that the analysis was correct, looked for what was missing and the list goes on and on. They were part of the study team and truly enriched the experience for everyone. Several members of our group have axial SpA and I always say that I can share things with my patients that others have shared with me, but that I don’t wear the axial SpA t-shirt! They do and their expertise is invaluable.

One of the essential outcomes of research is to disseminate and share what you have found and getting it incorporated into clinical practice.  Working with the wonderful Sally Dickinson, I have recently helped NASS to update their fatigue information which can be accessed here: https://nass.co.uk/wp-content/uploads/2019/11/Managing-my-axial-SpA-AS-fatigue.pdf

We have been able to give back to our research funders a lot of detailed information about how fatigue is affecting the lives of people with axial SpA. From the early interviews people living with axial SpA told us that:

·         Fatigue is difficult to live with due to the erratic nature of its effects which include the frequency, severity and duration. Fatigue fluctuates and varies between days and weeks, so it is difficult to work around. It’s unpredictable.

·         Fatigue can affect you physically, making your limbs feel heavy and feeling like lead.

·         Fatigue challenges you mentally affecting your ability to concentrate and can make you feel “drunk with tiredness”.  You may become more forgetful than normal and even following conversations can be a challenging. It can also make you feel low in mood, worried, anxious and even guilty.

·         Struggling to find energy can make living or engaging in an active social life really difficult, even if it’s just going for a coffee with a friend! This can make you feel a little more cautious, socially withdrawn and even isolated at times.

One of the important problems is that people can often feel that fatigue is ‘invisible’ and how frustrating it can be that people around them don't understand or ‘get it’ which can leave you feeling misunderstood and alone. They also felt that when people understand and can support them (doing small errands or just to talk to), this really helps.

I must thank my superb Occupational Therapy colleagues who have helped me to understand that by giving people the opportunity to talk about their fatigue experience, and evaluate its effects on their lives, I can enable and help them to make changes. I confess that I hadn’t heard of the ‘fatigue diary’ concept until I asked for their help. I also discovered the importance of following the ‘Three P’s’ which are becoming engrained in my own clinical practice. These are: Planning your activity in advance, Prioritising your tasks for the day and Pacing which encourages breaking down your activity by having regular rest periods. Little and often is key!

We have now been able to produce the Warwick Axial Spondyloarthritis faTigue and Energy measure (WASTEd) questionnaire and complete the initial testing of this. Nathan has now been awarded his PhD and our next steps will be to test this further so that it will be fit to use in clinical practice. We will then have a fatigue and energy outcome measure specific to the needs of people with axial SpA, enabling us to begin to understand how different aspects of fatigue and perhaps more importantly ‘energy’ are having on the lives of people with axial SpA. The current format of the questionnaire has four different sections that explore these issues and will allow clinicians to have greater insights into how fatigue and or energy levels are affecting people’s lives. This will be amazing in that we could then signpost people to interventions that will be more personalised and then be able to measure the impact of this. 

What a journey from rating fatigue/tiredness over the past week from 1 – 10! 

If you are interested in finding out more, I have added our references from the research thus far and we have had two abstracts accepted for the British Society of Rheumatology meeting in April 2020. Look out for our papers which will hopefully be written in the near future. 

This, however, is an opportunity to most sincerely thank NASS for having faith in our research team to deliver the goods, our participants during each and every stage of the study thus far and our PPI group members.

ISOQOL Conference, Philadelphia USA – September 2017

Pearson, N, Packham, J, Tutton, L, Martindale, J, Strickland, G, Thompson, J, Haywood, K. Living with Axial Spondyloarthropathy (AxSpA) and fatigue: “drunk with tiredness”.

ISOQOL Conference, Dublin Ireland – October 2018

Pearson, N, Packham, J, Tutton, L, Martindale, J, Strickland, G, Thompson, J, Haywood, K. Using cognitive and there –step test interviews to pre-test the Warwick axial spondyloarthropathy tiredness and energy (WASTEd) questionnaire: A co-constructed self-report questionnaire. Quality of Life Research; Oct 2018; vol.27


Jane

Sleep and AS: do we consider the implications of the quality of sleep on our patients?

For several years now as part of my routine assessment of all our AS and Axial SpA patients, I have been asking how well people felt that they had slept over the past week. I use a simple verbal VAS scale from zero to 10 with 10 being ‘I have slept wonderfully’ and zero being ‘I haven’t slept at all’. There is no science behind the question but it is meant to open a conversation and it does.

I hear a varied range of explanations as to why sleep has been interrupted and poor which have included a full spectrum ranging from menopausal flushes, stress at work, trips too frequently to the toilet, babies and children in general of all ages and early waking pets etc. etc.

However what I listen for is the waking in the middle of the night with pain and stiffness as this gives us an opening to ask what (if any) coping strategies people employ. From listening to our patients over the years I now advise not fighting the pain and or stiffness and stubbornly lying there but to get up and stretch.
I say ‘go down stairs (if you have them), put the kettle on (you don’t need to make a drink and if you do steer away from caffeine) and stretch whilst it boils. If you are sore, heat your wheat pack in the microwave and stretch as it warms then take it back to bed with you.’
Alas we have no science to ensure that people sleep better. The best I have is to advise on ‘sleep hygiene’ which is a term that I confess I squirm when saying. Poor sleep is blamed for increasing fatigue and generally lowering our mood and resilience in coping with life in general. A very recently published study on sleep in AS authored by Alison Wadeley (Clinical Rheumatology (2018) 37:1045-1052) is the first of it’s kind in the UK and is well worth a read.
It is a large cross sectional, observational, single centre study using the data of 659 patients with both AS and Axial SpA . Key messages are that not unsurprisingly poor sleepers have higher disease activity and fatigue scores and more night-time back pain than good sleepers. Poor sleepers also had poorer quality of life, general health, mood and work-related measures. Poor sleep was also associated with poor mood, female gender, greater fatigue, greater disease activity (specifically, spinal pain and stiffness) and better mobility although the direction of causality between poor sleep and markers of active disease was undetermined. A further thought is that we need to standardise the measurement of sleep disturbance.
Having now begun to absorb the messages from this study, as a clinician this all makes perfect sense. Wouldn’t it be wonderful if we could use a short questionnaire that would help us to understand the implications that sleep quality has had on our patient’s lives and then be able to have the intervention to help to improve this. Frustratingly I fear that several years may need to pass and a lot of hard and dedicated work to reach this stage.
For the time being, I will continue to ask about sleep and do my best to suggest how this may be improved without ‘proper science’. My thanks go to Alison and her co-authors for highlighting sleep as an important and integral aspect of a person’s life as they live with their AS. I would encourage our Rheumatology community to at the very least to have a conversation with their patients about the quality of their patient’s sleep. At the very least this would acknowledge that we are aware of the impact that this could be having on the way that they are currently coping with their condition.


Jane

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