Objectives Patients with rheumatoid arthritis (RA) commonly experience fatigue. The aim of this study was to gain further insight into the experience of fatigue in RA.
Methods Participants were 31 outpatients with RA of Medical Spectrum Twente, Enschede, The Netherlands, with all levels of fatigue. In-depth structured interviews on the patients' experience of fatigue were conducted and analysed using a bottom-up coding scheme, meaning that answers of patients were summarised and categorised.
Results Patients' mean fatigue severity score was 50 (visual analogue scale (VAS); theoretical range 0–100). Interviews showed interindividual differences in the experience and impact of fatigue. Different patterns in emotions, consequences and management of fatigue were found. Especially younger women with multiple daily roles seemed to be vulnerable to the negative impact of RA fatigue. Patients also reported positive aspects of fatigue. Moreover, varying forms of fatigue were described.
Conclusions Results point to the existence of differences in fatigue experience according to gender, age and daily roles. This finding indicates a need for targeting advice and interventions to the individual situation of a patient. Furthermore, the positive aspects patients reported about their fatigue could facilitate an approach that is focused on remaining opportunities and not just on restrictions.
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Patients with rheumatoid arthritis (RA) mention fatigue as one of their most bothersome symptoms.1 An internationally accepted definition of fatigue in RA does not exist,2 and little is known about its aetiology and the possibilities for support by health professionals.3 4 Three studies on the experience of fatigue in RA5,–,7 showed that fatigue is a multidimensional, bothersome symptom with far-reaching consequences. However, these results were found in small or highly selective samples5 7 or with predetermined coding schemes.6 These studies give a first explorative insight into the experience of RA fatigue, but did not address differences between patients in their descriptions of fatigue. As the subjective experience of a symptom is always influenced by an interaction of several individual patient characteristics,8 we were interested in intraindividual differences in the experience of RA fatigue. Patients with osteoarthritis have reported varying forms of fatigue, making a distinction between physical and mental fatigue.9 Hence we were interested whether fatigue experience differs between patients with RA and whether one patient can have different experiences of fatigue.
Patients and methods
In February and March 2008, consecutive outpatients visiting the rheumatology clinic of Medical Spectrum Twente, Enschede, The Netherlands, were invited to participate. Selection criterion was a diagnosis of RA minimally 2 years ago, so that patients were able to talk about a certain amount of experience with RA fatigue. Interested patients received an information letter about the study and made an appointment with the interviewer (SN). Patients completed a questionnaire via a computer with touch screen at the hospital. More information about the methods can be found in the supplementary material.
The interviewer (SN) used a hierarchical interview scheme comprising eight main topics (table 1) with several subquestions. The interview scheme was based on the interview schedules used in the previous interview studies5 7 and a literature search on fatigue models.
We used an approach that combines deductive and inductive elements of analysis. This approach is similar to the framework approach,10 but the deductive element is slightly more dominant. All interviews were recorded on audiotape and transcribed verbatim. After careful reading of the interviews by three researchers (SN, CB, ET), a coding scheme was developed bottom-up, meaning that the answers of patients were summarised and categorised, without using predetermined categories. With some new codes emerging during the coding process, previously coded interviews were checked for them. Three researchers (SN, CB, ET) coded 10% of the interviews to check the inter-rater reliability. Kappa values were calculated for each interview question. The mean value of 0.63 was sufficient.11 Statements with different codes were discussed until full consensus was reached.
The sample consisted of 31 outpatients; 8 men and 23 women with a mean age of 58 years (SD=13.78), ranging from 32 to 83. Further sample characteristics are shown in the supplementary material. In the following paragraph, we present our qualitative results with focus on meaning and description of fatigue. The supplementary material also contains further information about striking differences between patients.
Negative emotions related to fatigue
Most negative emotions were reported by women patients. Only two men mentioned unpleasant emotions at all: slightly worsened mood and feeling useless. Women reported “being oversensitive, becoming irritated more quickly, not being able to deal with things or being catty”, being angry, being in a bad or depressive mood, feeling miserable, rebellious, unpleasant, sad, down, despondent, frustrated, aggressive, anxious, self-pitying or misunderstood. “Well, if you're really tired, you're just angry with yourself. (…) That you're tired again. You don't want to be, but you are. (…)” (respondent (R) 13, woman, 39 years old, mother, spouse, housewife, employee). It was remarkable that especially younger women with multiple daily roles experienced negative emotions related to fatigue.
Consequences of fatigue
Most patients reported fatigue having consequences for daily life; they felt impeded in their mobility and activities. Only a few older patients (>67 years) reported no consequences at all. Many patients felt restricted by fatigue in housekeeping and gardening. “Yes, that you can't get on with things like you used to. That you just have to rest more (…) that you have to become more easygoing about your work. That everything here doesn't sparkle or shine like a new pin, and yes, you just have to learn to accept it” (R3, woman, 52, mother, spouse, housewife, employee). No man, but several women reported consequences for social contacts, for example, having to cancel appointments because of fatigue. For some women helping and supporting others became more difficult, and some women experienced stress from fatigue. Several women reported work-related consequences, for example, being unable to work (in a certain job), or being tired during work.
Coping with fatigue
Only women reported that their ability to successfully cope with fatigue was variable. “Yes, it can vary; it depends on how I feel. Sometimes I accept it, but other times I can't; I can get angry, rebellious” (R32, woman, 55, spouse, housewife, employee). No man reported having to dose activities and find a balance, but several women did. “Yes, I used to work full time, on top of the housekeeping and the children, you just did it. And now you have to plan what you're going to do, which means there are some things you can't. Ah, your entire day revolves around it and spent thinking how you're going to get through the day” (R1, woman, 44, mother, spouse, housewife, employee).
Different forms of fatigue
Some patients reported varying fatigue experiences. They distinguished between mental and physical fatigue, fatigue with or without a prior reason (such as poor sleep or physical activity), fatigue in combination with or without pain, with or without dizziness and with or without the desire to go to bed and sleep. “Around quarter to 11 I start to yawn, and want to go to bed. Right, but that's not the kind of tiredness I feel at 3 in the afternoon. (…) I don't want to go to bed. Then it's just sitting and being so tired you can't even put your cup down on the table” (R7, woman, 65). Furthermore, patients described differences between forms of fatigue based on severity, frequency or duration.
Most patients had difficulties to specify at least one of the following points: how severe the fatigue is, how often the fatigue occurs and how long it lasts. Patients thought the reason was that fatigue is not always the same. “I have weeks in which I'm really tired for 3 or 4 days. And I have weeks that are fine. (…) But it depends of course on what you're doing, what the circumstances are; even the weather can have an effect” (R6, woman, 59).
Some patients saw positive aspects of fatigue, as making more conscious decisions in life “You just go about things a bit differently and you make more conscious decisions about what is really important. (…) That's the positive side of it. Normally I would probably have just gone on racing about doing all sorts of things, but now you just think about it more” (R14, woman, 42), learning to let things go “I'm sure you also learn from it that not everything is so important that you have to do everything you want to. That you can also just give in and leave things as they are. (…) Of course I'm lucky that I don't have a busy job, so it's easy for me to give in. (…)” (R6, woman, 59), or learning to appreciate the beneficial aspects of rest “Undoubtedly, because you come to rest. (…) rest is a natural phenomenon I think, which is good for humans. So it [the fatigue] will undoubtedly have positive aspects” (R5, man, 68). Patients also reported that fatigue can make daily life easier; being able to fall asleep easier than before, that the boss can see when one is really tired and being able to use fatigue as an excuse.
This is the first study showing interindividual and intraindividual differences in the patients' experience of RA fatigue, and that fatigue can also have benefits for patients as well.
Compared to men, women reported gender-specific coping patterns, more negative emotions and more consequences of fatigue. This applied especially to younger women with multiple daily roles (eg, spouse, employee, housekeeping, childcare). In contrast, only older patients reported no consequences of fatigue at all. In this study, fewer men than women participated, which may reduce the generalisability of the results. However, the spreading of the sample almost corresponds to the epidemiological distribution in RA.12 We obtained information about daily roles from demographic data and asking patients about their daily activities. For future fatigue research we recommend to comprehensively measure daily roles, because it seems likely that not gender and age as such are associated with the experience of fatigue, but the amount of daily roles. Compared to men, women more often fulfil multiple roles in daily life.13 14 After retirement, people have fewer roles,15 and expectations from others are less demanding. Therefore women might feel more restricted by fatigue than men, and older people might be able to cope with fatigue more easily. Women reported managing fatigue by dosing and planning their activities to find a balance between activity and rest. Negative emotions related to fatigue might occur when personal possibilities do not meet with one's expectations and wishes, and might be worsened by external demands related to multiple roles. Consequently, to reduce or prevent negative emotions, adjustment of personal goals and standards as well as negotiating external demands might be a good strategy.16 17 Moreover, developing or strengthening an awareness of positive fatigue aspects, could be valuable in reducing negative emotions. Previous interview studies did not report beneficial aspects of fatigue, probably because the patients were not asked about it. However, their existence is of special importance since the ability to find something beneficial in a negative experience can lead to improvements in adaptation and health.18
In daily clinical practice professionals should have a supportive attitude to allow patients to discuss their fatigue, because its description can be difficult due to various forms and variations in severity, frequency and duration. A theoretical, comprehensive model explaining the experience of RA fatigue is still lacking.19 In future research, the dimensions of RA fatigue and possibly related patient characteristics should be examined in more detail. This study was qualitative, and did not test hypotheses about differences between patients. However, our data show new indications for the existence of such differences in the experience and description of RA fatigue. These new results could inform future quantitative research.
The results of this study point to the relevance for an individualised professional approach and a precise measurement of fatigue in patients with rheumatoid arthritis. The positive aspects patients reported about their fatigue could facilitate an approach that is focused on remaining opportunities and not just on restrictions.
We would like to thank the patients with RA who participated in this study.
Funding This work was supported by the Foundation of Rheumatism Research Twente (Stichting Reumaonderzoek Twente) and the Institute of Behavioural Research.
Competing interests None.
Provenance and peer review Not commissioned; externally peer reviewed.
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