Patient Views on Interventions, Managing Fatigue in AS
Of 102 invitations sent, 45 (46%) potential participants returned the EOI form with 24/45 (53%) expressing interest in participating in a focus group. 18/45 (40%) were not interested (declined) and 3/45 (7%) returned a blank EOI form. Reasons for not participating in this study included, ill-health, being a full-time carer and not wanting to join a group discussion. 14/24 (58%) who expressed an interest, participated in one of the two focus groups. 10/24 (42%) were not available on the dates selected for the focus groups. All participants (n = 14, 7 male) had a clinical diagnosis of AS with an average disease duration (based on date of diagnosis) of 29 years (range 8–46 years). Participants consisted of 3 males/4 females (group 1) and 4 males/3 females (group 2), aged between 35 and 73 years (mean age 53 years). All participants were Caucasian. One participant (1/14) was on a tumor necrosis factor (TNF) blocker.
The characteristics of the participants who attended the focus groups (n = 14) were comparable with those who declined (n = 18) and comparable to the population from which they were selected (all PAS participants (n = 533)) for age: mean age was 50, 49 and 53 years, respectively. Disease duration: was slightly longer (29 years) in the focus group participants compared with 18 years and 22 years, for declined and population, respectively. However, the percentage of females appeared higher for those attending the focus group 50% (7/14) compared to the population, 25% (134/533). In addition, the fatigue levels appeared higher in the focus group participants 72% (10/14) compared to those who declined to participate 50% (9/18).
This study identified 3 main themes; [1] Pervasive fatigue; [2] current limitations (of self-management); and [3] a new direction (for future interventions).
(1) Pervasive fatigue
Participants reported many 'life' influences which exacerbated or contributed to feelings of fatigue including; age, lack of sleep, night time pain, low-mood, depression, lack of concentration, side effects from medication, work commitments and the unpredictability of the condition. One participant felt it was difficult to distinguish 'age-related' symptoms from fatigue in AS "I nod off in the chair, but that's not fatigue, that is just getting old and getting tired". Other participants make a clear distinction that fatigue is exacerbated by lack of sleep caused by pain "I can't remember ever having a good night's sleep. I wake up constantly every couple of hours through pain, I never sleep through, so I am constantly tired", which in turn causes physical symptoms such as "a burning sensation with your eyes when you are really tired".
The majority of participants expressed that side-effects from analgesic medication also contributed to feelings of fatigue with many participants expressing concern that their medication was adding to their fatigue "I always put it [fatigue] down to my pain and then I wasn't sure if it was the medication…other members of my family also take high doses of co-codamol and it sends them to sleep…" Also, fatigue is unpredictable "you can get this tiredness for no reason. It just comes on you…" whereas another participant implied "I never found that I was tired generally, only after a flare up."
Work commitments were on one hand viewed as a motivator for life, one participant said "it [job] keeps me going", but alternatively another participant who finished work due to fatigue in AS stated "I have finished work now so I am managing much better, but when I was working I found it very hard, you could just cry or you felt physically sick because you felt so tired." In agreement one participant stated "In the end I just gave up work…it made it easier physically not having to go in, but I still find I am having periods of mood swings and depression…the longer it [sleep problems] goes on then the more mood swings kick in." Another participant found it "hard to concentrate in work because you felt so tired."
There was a general consensus over the uncertainty of whether the symptoms of AS (such as pain, impaired sleep) caused fatigue or if fatigue was a symptom of AS. One participant questioned "Has the humira [adalimumab] helped me with the fatigue or has it helped with my sleeping pattern which has indirectly helped with my fatigue?".
The next theme highlights self-management interventions used by participants including experiences and challenges.
(2) Current limitations (of self-management)
Participants were encouraged in the focus group to discuss what interventions or treatments they had tried, or wanted to try with regard to self-managing their fatigue. Responses ranged from; having a positive attitude "just keep on going" and "trying to see the glass half full not half empty", self-medication "I will take more co-codamol", keeping active "every day I walk for a good hour with the dogs, I swim and I keep active", and being a member of a gym. Hydrotherapy was a popular activity, but finding a warm pool and the cost involved were viewed as problematic "it would be lovely to swim in a warm pool but the prices these places are charging." One participant stated they felt they "had to exercise that was the leveller…..if I don't do it [exercise] I am in real trouble." Other participants reported sleeping for short periods of time "a 10 minute power nap and I am fine again".
Some participants implied they tried not to rely on medication for managing their AS due to the many side-effects experienced. The following quote illustrates this situation: "I was taking indomethacin for the pain but it caused the bowel to flare up and I was hospitalised with that….so I try and manage without drugs if I can…but of course you have to if the pain is very bad."
As part of the focus group participants were shown a 3 minute video clip on amitriptyline medication [24] (which can be prescribed before bedtime for fatigue and pain in chronic musculoskeletal conditions), including how it works, dosage and its advantages for managing chronic nerve pain. Four out of 14 participants had used with this type of medication previously. Ten participants had no previous knowledge "I have never heard of it". Participants who had taken amitriptyline complained of side-effects "…I took it for a couple of months…..it just made me feel like a zombie…I felt worse". Another participant experienced a dry mouth and feeling drowsy in the morning. One participant who had taken amitriptyline for over 2 years reported no side-effects but implied the drug made no difference to her symptoms "I honestly don't see any difference really, I mean I was wandering around at 3 o'clock this morning…I couldn't sleep…". The fourth participant with experience of amitriptyline stated she was wary of taking an antidepressant "It frightened me a bit when they [rheumatologist] mentioned antidepressant….I thought that it might be addictive but I didn't know so I took it for a week then I stopped just in case I got addicted to it."
A few participants had tried alternative or complementary interventions for managing fatigue. One participant tried meditation guided by an occupational health advisor which was "lovely" but not very useful when experiencing a flare "I didn't find that really very good for when you are having a bad time which is really when I thought it would be." Acupuncture, TENS machines and heat wraps were described as "pleasant", but provided only "temporary" pain relief. One participant suggested that breathing exercises "worked if you had real acute pain and you tried to focus on your breathing". Yoga and Pilates activity seemed to be avoided due to fear of "over doing it" especially during a "flare-up".
(3) A new direction (for future interventions)
Participants were also shown a 3 minutes video clip on MBSR, a psychological intervention which has been shown to have physical and psychological benefits in numerous health conditions and was originally developed for managing chronic pain. None of the participants had heard of MBSR and only one had tried a psychological intervention (cognitive behaviour therapy – CBT) for depression and anxiety, rather than management of fatigue in AS.
The majority of participants in this study were open to trying MBSR and many requested more information about available courses. The following quotes illustrate this: One participant stated "You never know with these things [psychological interventions] sometimes they work and sometimes they don't but it is well worth trying isn't it really." Another participant commented, "I think it [MBSR] is something that I would like to try… I would give it a go". Several participants appeared very enthusiastic expressing "I would like some more information about this" and "If there was a chance for me to go on a course I would go" and "I would be very happy in experiencing that sort of technique." It was also suggested that MBSR should be available to significant others or carers of the person with AS, with one participant saying "I think my wife would benefit from it and her stress levels…"
The group discussion evolved towards the different delivery modes of MBSR which is traditionally delivered in a weekly group session of 2.5 hours over 8 consecutive weeks. Other potential modes of deliver explored included on-line courses and distance delivery over the telephone with a similar time delivery (over 8 weeks). Most participants in this study expressed a preference for the traditional group structure rather than on-line or distance delivery.
However, reasons were put forward to advocate the MBSR delivery method to fit the needs of the individual: "When I was working I would have found it difficult to commit to 1 day a week for 8 weeks, so the distance delivery might be better." And another participant commented "There will always be people that don't want to talk about it to another person" and "there would have to be something that would suit all people not just one thing (one delivery mode)".
When probed for future research ideas for fatigue in AS it became apparent that most participants wanted more 'alternative' or 'psychological therapy' interventions funded rather than focusing on more drug trials and research into orthodox medication. The following quotes illustrate this view: "I think there is a lot of research when it comes to drugs in AS and there is not a lot of research which it comes to alternative therapies" and "I think the answer is to research different things"
Results
Of 102 invitations sent, 45 (46%) potential participants returned the EOI form with 24/45 (53%) expressing interest in participating in a focus group. 18/45 (40%) were not interested (declined) and 3/45 (7%) returned a blank EOI form. Reasons for not participating in this study included, ill-health, being a full-time carer and not wanting to join a group discussion. 14/24 (58%) who expressed an interest, participated in one of the two focus groups. 10/24 (42%) were not available on the dates selected for the focus groups. All participants (n = 14, 7 male) had a clinical diagnosis of AS with an average disease duration (based on date of diagnosis) of 29 years (range 8–46 years). Participants consisted of 3 males/4 females (group 1) and 4 males/3 females (group 2), aged between 35 and 73 years (mean age 53 years). All participants were Caucasian. One participant (1/14) was on a tumor necrosis factor (TNF) blocker.
The characteristics of the participants who attended the focus groups (n = 14) were comparable with those who declined (n = 18) and comparable to the population from which they were selected (all PAS participants (n = 533)) for age: mean age was 50, 49 and 53 years, respectively. Disease duration: was slightly longer (29 years) in the focus group participants compared with 18 years and 22 years, for declined and population, respectively. However, the percentage of females appeared higher for those attending the focus group 50% (7/14) compared to the population, 25% (134/533). In addition, the fatigue levels appeared higher in the focus group participants 72% (10/14) compared to those who declined to participate 50% (9/18).
This study identified 3 main themes; [1] Pervasive fatigue; [2] current limitations (of self-management); and [3] a new direction (for future interventions).
(1) Pervasive fatigue
Participants reported many 'life' influences which exacerbated or contributed to feelings of fatigue including; age, lack of sleep, night time pain, low-mood, depression, lack of concentration, side effects from medication, work commitments and the unpredictability of the condition. One participant felt it was difficult to distinguish 'age-related' symptoms from fatigue in AS "I nod off in the chair, but that's not fatigue, that is just getting old and getting tired". Other participants make a clear distinction that fatigue is exacerbated by lack of sleep caused by pain "I can't remember ever having a good night's sleep. I wake up constantly every couple of hours through pain, I never sleep through, so I am constantly tired", which in turn causes physical symptoms such as "a burning sensation with your eyes when you are really tired".
The majority of participants expressed that side-effects from analgesic medication also contributed to feelings of fatigue with many participants expressing concern that their medication was adding to their fatigue "I always put it [fatigue] down to my pain and then I wasn't sure if it was the medication…other members of my family also take high doses of co-codamol and it sends them to sleep…" Also, fatigue is unpredictable "you can get this tiredness for no reason. It just comes on you…" whereas another participant implied "I never found that I was tired generally, only after a flare up."
Work commitments were on one hand viewed as a motivator for life, one participant said "it [job] keeps me going", but alternatively another participant who finished work due to fatigue in AS stated "I have finished work now so I am managing much better, but when I was working I found it very hard, you could just cry or you felt physically sick because you felt so tired." In agreement one participant stated "In the end I just gave up work…it made it easier physically not having to go in, but I still find I am having periods of mood swings and depression…the longer it [sleep problems] goes on then the more mood swings kick in." Another participant found it "hard to concentrate in work because you felt so tired."
There was a general consensus over the uncertainty of whether the symptoms of AS (such as pain, impaired sleep) caused fatigue or if fatigue was a symptom of AS. One participant questioned "Has the humira [adalimumab] helped me with the fatigue or has it helped with my sleeping pattern which has indirectly helped with my fatigue?".
The next theme highlights self-management interventions used by participants including experiences and challenges.
(2) Current limitations (of self-management)
Participants were encouraged in the focus group to discuss what interventions or treatments they had tried, or wanted to try with regard to self-managing their fatigue. Responses ranged from; having a positive attitude "just keep on going" and "trying to see the glass half full not half empty", self-medication "I will take more co-codamol", keeping active "every day I walk for a good hour with the dogs, I swim and I keep active", and being a member of a gym. Hydrotherapy was a popular activity, but finding a warm pool and the cost involved were viewed as problematic "it would be lovely to swim in a warm pool but the prices these places are charging." One participant stated they felt they "had to exercise that was the leveller…..if I don't do it [exercise] I am in real trouble." Other participants reported sleeping for short periods of time "a 10 minute power nap and I am fine again".
Some participants implied they tried not to rely on medication for managing their AS due to the many side-effects experienced. The following quote illustrates this situation: "I was taking indomethacin for the pain but it caused the bowel to flare up and I was hospitalised with that….so I try and manage without drugs if I can…but of course you have to if the pain is very bad."
As part of the focus group participants were shown a 3 minute video clip on amitriptyline medication [24] (which can be prescribed before bedtime for fatigue and pain in chronic musculoskeletal conditions), including how it works, dosage and its advantages for managing chronic nerve pain. Four out of 14 participants had used with this type of medication previously. Ten participants had no previous knowledge "I have never heard of it". Participants who had taken amitriptyline complained of side-effects "…I took it for a couple of months…..it just made me feel like a zombie…I felt worse". Another participant experienced a dry mouth and feeling drowsy in the morning. One participant who had taken amitriptyline for over 2 years reported no side-effects but implied the drug made no difference to her symptoms "I honestly don't see any difference really, I mean I was wandering around at 3 o'clock this morning…I couldn't sleep…". The fourth participant with experience of amitriptyline stated she was wary of taking an antidepressant "It frightened me a bit when they [rheumatologist] mentioned antidepressant….I thought that it might be addictive but I didn't know so I took it for a week then I stopped just in case I got addicted to it."
A few participants had tried alternative or complementary interventions for managing fatigue. One participant tried meditation guided by an occupational health advisor which was "lovely" but not very useful when experiencing a flare "I didn't find that really very good for when you are having a bad time which is really when I thought it would be." Acupuncture, TENS machines and heat wraps were described as "pleasant", but provided only "temporary" pain relief. One participant suggested that breathing exercises "worked if you had real acute pain and you tried to focus on your breathing". Yoga and Pilates activity seemed to be avoided due to fear of "over doing it" especially during a "flare-up".
(3) A new direction (for future interventions)
Participants were also shown a 3 minutes video clip on MBSR, a psychological intervention which has been shown to have physical and psychological benefits in numerous health conditions and was originally developed for managing chronic pain. None of the participants had heard of MBSR and only one had tried a psychological intervention (cognitive behaviour therapy – CBT) for depression and anxiety, rather than management of fatigue in AS.
The majority of participants in this study were open to trying MBSR and many requested more information about available courses. The following quotes illustrate this: One participant stated "You never know with these things [psychological interventions] sometimes they work and sometimes they don't but it is well worth trying isn't it really." Another participant commented, "I think it [MBSR] is something that I would like to try… I would give it a go". Several participants appeared very enthusiastic expressing "I would like some more information about this" and "If there was a chance for me to go on a course I would go" and "I would be very happy in experiencing that sort of technique." It was also suggested that MBSR should be available to significant others or carers of the person with AS, with one participant saying "I think my wife would benefit from it and her stress levels…"
The group discussion evolved towards the different delivery modes of MBSR which is traditionally delivered in a weekly group session of 2.5 hours over 8 consecutive weeks. Other potential modes of deliver explored included on-line courses and distance delivery over the telephone with a similar time delivery (over 8 weeks). Most participants in this study expressed a preference for the traditional group structure rather than on-line or distance delivery.
However, reasons were put forward to advocate the MBSR delivery method to fit the needs of the individual: "When I was working I would have found it difficult to commit to 1 day a week for 8 weeks, so the distance delivery might be better." And another participant commented "There will always be people that don't want to talk about it to another person" and "there would have to be something that would suit all people not just one thing (one delivery mode)".
When probed for future research ideas for fatigue in AS it became apparent that most participants wanted more 'alternative' or 'psychological therapy' interventions funded rather than focusing on more drug trials and research into orthodox medication. The following quotes illustrate this view: "I think there is a lot of research when it comes to drugs in AS and there is not a lot of research which it comes to alternative therapies" and "I think the answer is to research different things"
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