Ankylosing spondylitis (AS) is a chronic inflammatory rheumatic condition of the spine with disease onset usually occurring between late adolescence and early adulthood [
Medical management of AS focuses on reducing and controlling pain and inflammation and preserving physical functioning and quality of life while also trying to minimise damage to joints caused by the disease process [
Fatigue has been identified as a prominent symptom of AS and is now the third most commonly reported symptom after stiffness and pain [
Although no definite causes have yet been identified for fatigue in AS, a number of factors are believed to be associated with increased fatigue. These include disease activity, pain, stiffness, low mood, and lifestyle factors such as reduced physical activity, poor diet, and disrupted sleep [
Occupational therapists are often the profession to provide fatigue management interventions and education to individuals with chronic diseases who experience fatigue [
Participants were recruited from a dedicated weekly AS clinic in an urban hospital using convenience sampling [
Three fatigue measures were used in this study. Two of the scales, the Fatigue Severity Scale (FSS) [
The FSS is a 9-item self-report fatigue scale that measures the impact of fatigue on everyday activities. It generates a global score from 0-7, with a score of four and over indicating significant fatigue [
The BASDAI is an AS-specific measure designed to assess an individual’s experience of disease activity over the past week [
The single-item fatigue visual analogue scale (VAS) on the Bath Ankylosing Spondylitis Disease Activity Index (BASDAI) is measured on a scale of 0-10 (none to very severe) [
The MAF is a 16-item self-report measure used to assess the multiple aspects of fatigue. The MAF generates a global score the Global Fatigue Index (GFI) from the first 15 items of severity, distress, impact on daily activities, and timing of fatigue. The scores range from 1 (no fatigue) to 50 (severe fatigue) [
The FAI is a 15-item self-report questionnaire that consists of three subscales of domestic activities, leisure/work, and outdoor activities [
The PtGA is a single-item 0-10 scale designed to measure the overall impact of AS on the individual at a point in time. Higher scores indicate higher disease activity [
The BASFI is a 10-item self-report questionnaire that measures an individual’s ability in physical movements such as bending, reaching, turning, and climbing steps [
Pain (total and nocturnal) was assessed using a numerical rating scale ranging from 0 (no pain) to 10 (unbearable pain) with higher scores indicating more severe levels of pain [
The ASQoL measures the impact of AS on health-related quality of life. It is an 18-item binary response scale. Items include impact of AS on sleep, mood, motivation, coping, activities of daily living, independence, relationships, and social life. Scores range from 0-18 with higher scores indicating poorer quality of life [
The BAS-G assesses a person’s overall sense of well-being in relation to disease activity in AS. The BAS-G consists of two 10-point scale questions (0 no effect to 10 very severe effect) related to well-being over the past week and the past six months. The mean of the two scores is the final score with the scores ranging from 0 (no effect of disease on well-being) to 10 (worst effect disease on well-being) [
Qualitative data were collected through semistructured interviews. Individual interviews are the most frequently used data collection method in qualitative studies [
Data were analysed using Statistical Package for the Social Science (SPSS) version 20. Descriptive statistical analysis was carried out to test for trends and frequencies [
All interviews were transcribed verbatim and transferred to NVivo computer software for data analysis. Content analysis was used to guide analysis of the qualitative data. The aim of content analysis is to provide a condensed and broad description of the study phenomenon [
Fifty individuals with a confirmed diagnosis of AS participated in this study with 36 men and 14 women. The mean age of participants was 46.5 years, ranging from 26 to 76 years. Table
Demographic profile.
Demographic variable | |
---|---|
Total number of participants recruited | 50 |
Age | 46.5 years ( |
Age range | |
25-46 years | 29 (58%) |
47 and above | 21 (42%) |
Disease duration | 14.50 years ( |
Disease duration range | |
1-14 years | 28 (56%) |
15 years and above | 22 (44%) |
Gender | |
Men | 36 (72%) |
Women | 14 (28%) |
Marital status | |
Single | 15 (30%) |
Married | 32 (64%) |
Separated/divorced/widowed | 3 (6%) |
Living situation | |
Alone | 6 (12%) |
With someone | 44 (88%) |
Education levels | |
Completed second level | 21 (42%) |
Completed third level courses | 19 (38%) |
Employment status | |
Working | 30 (60%) |
Not working | 20 (40%) |
The mean FSS and BASDAI fatigue item scores were 4.2 (
Assessment mean values and standard deviations.
Assessment (score range) | Mean (SD) or |
---|---|
FSS (0-7) | 4.2 (±1.6) |
High fatigue scores (≥4) | 64% ( |
Low fatigue scores (≤3) | 34% ( |
BASDAI fatigue item (0-10) | 5.6 (±2.4) |
High fatigue scores (≥5) | 33 (66%) |
Low fatigue scores (≥4) | 14 (28%) |
MAF-GFI (0-50) | 18.2 (±7.74) |
High fatigue scores (≥21) | 19 (38%) |
Low fatigue scores (≤20) | 31 (62%) |
FAI total (0-45) | 31.9 (±7.14) |
Domestic (0-15) | 11.5 (±3.45) |
Leisure/work (0-15) | 9.7 (±3.11) |
Outdoors (0-15) | 10.7 (±2.91) |
BASDAI (0-10) | 4.5 (±2.40) |
PtGA | 4.1 (±2.36) |
BASFI (0-10) | 4.1 (±2.52) |
Pain (0-10) | |
Total | 4.0 (±2.37) |
Nocturnal | 3.4 (±2.64) |
ASQoL (0-17) | 7.0 (±4.92) |
BAS-G (0-10) | 4.6 (±2.52) |
Spearman rank correlational analyses tested for relationships between fatigue, activity levels, and disease-specific variables (disease activity, physical ability, pain, and quality of life) (Table
Correlations between fatigue and study variables.
FSS | MAF-GFI | BASDAI fatigue | ||||
---|---|---|---|---|---|---|
Rho value | Rho value | Rho value | ||||
FAI total | -0.16 | 0.27 | -0.33 | -0.32 | ||
BASDAI | 0.32 | 0.60 | 0.72 | |||
PtGA | 0.21 | 0.18 | 0.55 | -0.33 | ||
BASFI | 0.34 | 0.37 | 0.45 | |||
Pain | ||||||
Total | 0.42 | 0.54 | 0.57 | |||
Nocturnal | 0.45 | 0.56 | 0.49 | |||
ASQoL | 0.56 | 0.63 | 0.36 | |||
BAS-G | 0.29 | 0.64 | -0.72 |
Significance level:
As the MAF-GFI was significantly associated with all variables and it measures the impact of fatigue on daily activities, this measure was used to examine differences between individuals with high and low fatigue for activity participation, disease activity, physical abilities, pain, quality of life, and global well-being. There were significant differences in all study measures between those with high and low fatigue levels (Table
Mann-Whitney
Questionnaire (score range) | MAF GFI (≥21) |
MAF GFI (≤20) |
|
---|---|---|---|
FAI (0-45) | 30.0 (9-43) | 35.0 (9-43) | |
BASDAI (0-10) | 6.5 (1-10) | 3.1 (1-10) | |
PtGA (0-10) | 6.0 (0-9) | 3.0 (0-9) | |
BASFI (0-10) | 6.00 (0-10) | 3.0 (0-10) | |
Pain (0-10) | |||
Total pain | 6.0 (0-9) | 3.0 (0-9) | |
Nocturnal pain | 6.0 (0-9) | 2.0 (0-9) | |
ASQoL (0-17) | 11.0 (0-17) | 4.0 (0-17) | |
BAS-G | 7.5 | 3.0 |
Significance level:
Thirty-two people agreed to participate in an interview exploring the impact of fatigue on occupational participation. Of these, 19 people participated in the interviews. The remaining 13 were either unavailable for interview or not responding to the research team when contacted to arrange an interview despite repeated efforts. Table
Demographics of interview participants.
Age | Sex | Employment status | Marital status | |
---|---|---|---|---|
Participant 11 (P11) | 36 | Male | Employed | Single |
Participant 12 (P12) | 48 | Male | Employed | Married |
Participant 15 (P15) | 50 | Male | Employed | Single |
Participant 16 (P16) | 48 | Male | Employed | Married |
Participant 18 (P18) | 46 | Male | Employed | Married |
Participant 19 (P19) | 48 | Male | Employed | Married |
Participant 02 (P2) | 71 | Male | Retired | Married |
Participant 24 (P24) | 48 | Male | Employed | Married |
Participant 25 (P25) | 44 | Male | Unemployed | Single |
Participant 29 (P29) | 65 | Male | Retired | Single |
Participant 34 (P34) | 54 | Male | Unemployed | Married |
Participant 01 (P1) | 41 | Female | Unemployed | Married |
Participant 13 (P13) | 46 | Female | Employed | Divorced |
Participant 28 (P28) | 36 | Female | Employed | Single |
Participant 03 (P3) | 40 | Female | Unemployed | Divorced |
Participant 32 (P32) | 49 | Female | Unemployed | Married |
Participant 35 (P35) | 34 | Female | Employed | Married |
Participant 51 (P51) | 38 | Male | Employed | Married |
Participant 52 (P52) | 45 | Male | Employed | Single |
Four themes were identified from analysis of the qualitative data: (i) impact of fatigue on productivity, (ii) impact of fatigue on social participation, (iii) fatigue management strategies, and (iv) fatigue management education.
Eleven of those interviewed were in employment, and they discussed the impact of fatigue on their work performance particularly in relation to cognitive skills such as concentration:
“A lot of the work I do involves reading documents and synthsising and summarising them and you need concentration to do that. And sometimes I find that where ordinarily if you’re focused you’d only have to read over a document once whereas I’d have to maybe read it two or three times for it to sink in.” (P52)
Four participants discussed having to work longer hours during the week and at weekends in order to get all their works completed:
“I find that my working hours are extending into the evenings and sometimes into the weekend in order for me to meet the different requirements of the work that I’m doing at any particular time. So when that happens it impacts on other aspects of my life in terms of my fitness and in terms of getting away from work. And so it’s kind of a catch twenty-two.” (P52)
One participant whose work involved a considerable amount of time driving discussed the impact of this on stiffness and fatigue:
“I find long periods in the car very hard physically and you’re fatigued. You get so tired. The longest I could travel in a car now would be 45 minutes to an hour, and I’d have to get out - without a doubt I’d have to get out and walk around.” (P15)
Over half of the participants discussed modifying their work hours because of fatigue. For example:
“I’m just finding it too tiring now. So I want to go back to doing part-time because full-time is too much for me.” (P13)
The impact of fatigue on housework was also discussed:
“I could be doing just a few things around the house and I’d feel tired. It wouldn’t last very long, it works its way in and then I have to just stop and relax. Then the pain will ease off a little and I don’t feel as tired.” (P25).
A female participant discussed the impact of grocery shopping on her fatigue and the difficulty she experienced when shopping without her husband:
“If he (participant’s husband) has to work, and I have to go and do it on my own, it’s twice as hard because then of course I have to do the loading into the trolley and unloading it onto the belt and then loading it back off. Whereas, when we do it together it’s shared. It takes a lot out of you!” (P3)
The majority of participants discussed opting out of social activities because of their fatigue and needing to conserve their energy for work. One participant described how this impacted on his weekend social activities:
“Even at the weekend my girlfriend will say to me “Will we go out?”…and I’m just “Oh no - let’s just sit in and get a Chinese or something.” I just couldn’t be bothered. It does have a huge impact on your social life, without a doubt, because you’d just prefer to be at home because you’re so tired.” P15
One participant described feeling relieved when a social event was cancelled: “When it comes to going out, and somebody cancels, the relief you have because you’re tired - you’re thinking ‘great I can have an early night’.” (P28)
The majority of participants identified how being fatigued after work results in reduced energy for social activities:
“I’m tired when I get home from work and if I’m asked to go out somewhere I dread it! I think “Oh God” and it’s a late night. When I’m in a routine my body needs the rest after a day’s work. If it’s an evening out I can’t go past 12 o’ clock! I know that sounds terrible, but I’m just tired at that stage, I’m aching.” (P13)
Study participants identified various strategies they used to manage their fatigue such as pacing daily activities, planning their routines according to their energy levels, and making certain lifestyle choices.
Fourteen participants discussed how they pace their daily activities in order to reduce the impact of fatigue. For example:
“I try to take it easy… not to do so much during the day or to pack too much into the week and I’m still learning how to do that.” (P18)
“And you learn how to deal with pain and the same thing with fatigue because I love doing the gardening but I know when to stop have a bit of a break and then go back out and do it again. So, it’s more about how you deal with these issues as opposed to letting them get on top of you.” (P34)
One participant uses a diary to plan his weekly schedule:
“I use my diary to set things out but I still have a tendency to do too many things and then you’re really shattered.” P18
One of the participants who worked in construction discussed how working outside in extreme weather conditions affected his back pain and subsequently increased his fatigue. He managed this by negotiating a change in his work duties with his colleagues:
“I had to ask, because if not I would have lost my job. So I said to my colleagues “we’re going to have to do something about this!” So I set out an agreement with the lads that I do all the work inside and they share the work outside and they’re pretty happy with that.” (P12)
Many participants discussed how early in their disease trajectory they tended to ignore their fatigue and to carry on with their activities regardless of how much fatigue they experienced. For example:
“I thought that the best way for me to manage my fatigue was to ignore it and that eventually it would go away and that it just wouldn’t be a problem for me.” (P18)
However, this participant described how when we decided to communicate with family members and work colleagues about his fatigue that this helped him to accept the limitations caused by fatigue:
“It’s been helpful to speak out about it and to say “I do have some limitations” and it’s okay to say that about myself because I used to get very annoyed when I couldn’t do things, but not anymore.” (P18)
Changing attitudes towards fatigue was also identified as important:
“It’s just one of these things that you have to learn to live with or else let it get to you.” (P34)
Six participants identified that taking regular exercise was an effective method for managing fatigue. For example:
“Get some sort of exercise, because I know I have to keep moving. You just can’t be a lay-about when you have this …. you just have to keep on the move.” (P36)
“Your fatigued, you’re feeling tired, you have your dinner in the evening and there’s a lack of enthusiasm and motivation about putting on a pair of trainers and walking out the door and walking a few blocks or whatever it might be. But you need to discipline that and to watch that.” (P52)
The majority of participants discussed how taking rests during the day was helpful in managing fatigue. One participant described how taking a short rest can help her to complete an activity if having difficulty:
“I have to close my eyes. I suppose it’s a case of zoning out. I don’t think I’m officially asleep. I’m quite conscious of not going into sleep mode. But you need that rest, that down time.” (P35)
“When I’m tired, and my wife wants me to do something, I just say to her ‘I’m wrecked just let me have a rest for a while’. Then once I have that rest I’m grand again!” (P34)
Almost all participants identified a lack of education from health professionals regarding fatigue. They reported mixed responses to fatigue when they tried to bring it up during hospital appointments.
“I don’t think it gets enough attention.” (P51)
One participant reported that fatigue was often a minor aspect in educational material on how to manage symptoms of AS. “Yeah but maybe there’s just a lack of knowledge about it around. I’ve been given pamphlets about arthritis and the fatigue element is either very minor or never discussed on it.” (P15)
One of the interview participants believed that this was due to people with AS not discussing their fatigue with their health professionals:
“It’s a huge aspect of the disease and I wouldn’t blame medical people that it’s under rated. I think the patients themselves probably don’t articulate it enough. No one in the medical profession has asked me about my fatigue, but by the same token, I haven’t brought it up as an issue.” (P52)
As a result of not having received any formal education on fatigue, the majority of participants reported that most of their management strategies were self-developed:
“It’s all just trial and error. You pick up on things as you go along, you just pick up on things day to day.” (P11)
The majority of the participants in this study experienced significant fatigue as indicated by the FSS scores and the fatigue section of the BASDAI. This aligns with previous research which identified fatigue in up to 74% of individuals with AS [
There were significant relationships between fatigue (as measured by the BASDAI fatigue item and the MAF) and self-reported disease activity, physical capacity, pain, quality of life, and well-being. This demonstrates the relationship between these variables and how changes in clinical aspects of the disease and in fatigue can impact on each other. These significant relationships correspond with previous research examining relationships between fatigue, disease activity, and quality of life variables [
On examining occupational participation, the FAI category of “leisure/work” had the lowest rates of participation with statistically significant differences in the frequency of participation in all categories of the FAI between those with and without severe fatigue. Leisure participation was discussed by interview participants who reported withdrawing from social activities because of fatigue. Low levels of satisfaction with participation in social roles were also identified by van Genderen et al. [
The BASFI measures physical abilities such as bending, reaching, turning, and standing. In this study, physical ability was significantly related to fatigue and those with severe fatigue had significantly more difficulty with these movements. In their interviews, some participants identified housework and shopping as increasing their fatigue. These types of activities involve sustained reaching, bending, and standing which perhaps explains the reported difficulties with housework. This aligns with previous research which also found that AS limits individuals’ ability to participate in certain home-based activities [
Sixty percent of study participants were working, and this was an area discussed by interview participants as resulting in considerable fatigue. Participants discussed different requirements of their work such as driving and cognitive skills of concentration and memory, being impacted by fatigue. Other studies have explored the impact of AS on work and have reported that individuals with AS are three times more likely to resign from work than the general population [
The mean score for total and nocturnal pain indicated that participants in this study experienced mild-moderate pain. Initial analysis revealed that overall pain, and pain at night, was significantly associated with fatigue. This concurs with previous research which identified a relationship between pain and fatigue [
Interview participants reported using various strategies for managing their fatigue. These included pacing daily activities, modifying work routines, taking regular exercises, and taking a rest period during the day. Many of the strategies discussed were self-developed as participants in the qualitative part of this study reported a lack of formal education regarding fatigue in AS. Participants reported mixed reactions from healthcare professionals when they reported difficulty with fatigue which lead them to question health professionals’ knowledge on this symptom. This has been identified in other studies of individuals with rheumatic diseases with fatigue management strategies mainly acquired through trial and error with little to no input from health professionals [
How to measure fatigue in rheumatic diseases and the sensitivity of fatigue measures has received much attention in recent literature [
This study has provided information on the impact of AS-related fatigue on occupational participation. However, there are limitations to the study that could have impacted on the findings. The sample size was small and is representative only of the individuals who attend this particular AS clinic. The findings are also limited as data were only collected at one point in time whereas a longitudinal mixed method study would yield more comprehensive information on fluctuations in fatigue and in occupational participation over time. The qualitative aspect of this current study provided a general overview of impact of fatigue on occupational participation. However, the qualitative phase of a longitudinal mixed method study could use a phenomenological perspective to gain a more detailed and in-depth exploration of the experience of fatigue for individuals with AS.
This study explored the prevalence and impact of fatigue for individuals with ankylosing spondylitis. Three fatigue measures yielded different prevalence of rates in this sample thus indicating the need to ensure that the measure chosen to assess fatigue in individuals with AS provides the necessary information. For example, the FSS measure will provide information on severity of fatigue but is limited in measuring the impact of fatigue on daily activities.
There were significant differences between those with high and low levels of fatigue for disease activity, pain, frequency of occupational participation, and quality of life. Study participants identified fatigue as impacting specifically on work and social and leisure occupations. Fatigue management strategies were mainly self-taught indicating a need for formalised self-management support from relevant health professionals to reduce the impact of fatigue on productivity and leisure. Occupational therapists have specific skills and knowledge to provide these interventions.
The data used to support the findings of this study are available on request from the corresponding author.
This study was presented as an abstract in
The authors declare that they have no conflicts of interest.
The authors wish to acknowledge the individuals with ankylosing spondylitis who participated in this study.