“They didn't tell us, they made us work it out ourselves”: Patient perspectives of a cognitive–behavioral program for rheumatoid arthritis fatigue†
Article first published online: 27 MAR 2012
Copyright © 2012 by the American College of Rheumatology
Arthritis Care & Research
Volume 64, Issue 4, pages 494–501, April 2012
How to Cite
Dures, E., Kitchen, K., Almeida, C., Ambler, N., Cliss, A., Hammond, A., Knops, B., Morris, M., Swinkels, A. and Hewlett, S. (2012), “They didn't tell us, they made us work it out ourselves”: Patient perspectives of a cognitive–behavioral program for rheumatoid arthritis fatigue. Arthritis Care Res, 64: 494–501. doi: 10.1002/acr.21562
- Issue published online: 27 MAR 2012
- Article first published online: 27 MAR 2012
- Accepted manuscript online: 12 DEC 2011 01:12PM EST
- Manuscript Accepted: 7 DEC 2011
- Manuscript Received: 30 JUN 2011
- Arthritis Research UK. Grant Number: 17340
Fatigue is an overwhelming rheumatoid arthritis (RA) symptom caused by interacting clinical and psychosocial factors. Cognitive–behavioral therapy (CBT) addresses links between thoughts, feelings, and behaviors and uses cognitive restructuring to facilitate behavior changes. In a randomized controlled trial, a group CBT program for RA fatigue improved fatigue impact, severity, and perceived coping, as well as mood and quality of life. The aim of this study was to explore the patient perspective of the program and the impact of behavior changes.
Ten exit focus groups were held (38 patients). Transcripts were analyzed by an independent researcher using a hybrid thematic approach, with a subset analyzed by a team member and patient partner.
Three overarching themes were identified. In “they made us work it out ourselves” (program factors facilitating changes), patients spontaneously identified elements of group CBT as pivotal, including guided discovery, the impact of metaphors, and working as a group. In “feeling much better about yourself and coping much better” (the nature of changes), patients described cognitive changes, including enhanced self-efficacy and problem solving, and emotional changes, including being less volatile and fearful of fatigue. In “my life has changed so much it's unbelievable” (benefits beyond fatigue), patients reengaged in previously abandoned activities, were more active, and enjoyed greater social participation.
Patients highlighted that CBT elements were key to making behavior changes and that these had far-reaching impacts on their lives. This suggests it could be beneficial in clinical practice to incorporate cognitive–behavioral approaches into patient education programs that aim to enhance self-management.
Rheumatoid arthritis (RA) is a long-term condition causing chronic synovitis, characterized by unpredictable inflammatory flares and an uncertain outcome with potential joint destruction and functional disability (1, 2). Treatment comprises pharmacologic and multidisciplinary team interventions, including educational support for self-management (3). Research on important outcomes from the patient's perspective identified fatigue as a major concern that is common, overwhelming, and unmanageable (4–8). Quantitative studies consistently show that up to 70% of people with RA experience significant fatigue and that it is as severe as RA pain, and both predicts and differentiates between levels of quality of life (9–12). The acknowledgment of fatigue as an important symptom has resulted in international agreement that it should be measured in RA trials wherever possible (13). RA fatigue is likely to be caused by the complex interaction of clinical factors (inflammation, pain, disability) and psychosocial issues (coping, mood, illness beliefs) (14). Currently there is limited evidence for effective nonpharmacologic interventions for RA fatigue (15) apart from cognitive–behavioral therapy (CBT) (16, 17).
CBT addresses the links between thoughts, feelings, and behaviors (e.g., between working excess hours, thoughts of duty, and feelings of guilt if taking sick leave) and uses cognitive restructuring to help people make behavior changes (18). This is facilitated by the use of guided discovery or Socratic questioning, a collaborative process between patients and therapists to reach a shared understanding of underlying beliefs and to help patients reflect on how they interpret information. The method involves therapists asking questions to which patients can work out the answers, challenging patients' negative thoughts or unhelpful beliefs, and drawing attention to relevant information about behavior patterns. In responding to questions and becoming aware of their own thinking processes, a range of different perspectives is opened up for patients. This alternative thinking forms the blueprint for changing thoughts, feelings, and behaviors (19). A crucial element of guided discovery is that therapists remain nonjudgmental and do not give advice. The process enhances patients' self-efficacy (an individual's belief in their ability to carry out activities to achieve a desired outcome) and the development of core self-management skills, such as problem solving and goal setting (20). CBT delivered in the group setting offers a therapeutic opportunity to utilize group processes to aid patients' understanding of these cognitive and behavioral strategies, including learning from each others' experiences and experiments with behavior change (social cognition theory [SCT]) (21–23). A recent systematic review of rheumatology self-management interventions recommended the explicit use of CBT and/or SCT rather than didactic information provision in order to enhance self-efficacy (24).
In a recent randomized controlled trial (RCT), group CBT for the self-management of fatigue in RA was delivered by a clinical psychologist and a specialist occupational therapist in six 2-hour sessions held weekly, with a 1-hour consolidation session at week 14. Topics included activity pacing, stress management, communication, assertiveness, sleep, and managing setbacks, plus weekly goal setting and keeping an “Activity, Rest & Sleep Diary” (an hourly record of activity levels over a 1-week period). Quantitative findings showed reductions in the impact and severity of fatigue and improvements in disability, depression, helplessness, self-efficacy, and sleep (17). This qualitative study exploring the patient perspective was nested within the RCT with the aims of supporting the quantitative results through examples of individual experiences that lie behind the numbers, capturing any outcomes that were not measured in the RCT, and identifying which elements of the program were more effective and which were less effective (i.e., the working processes) (25, 26). As CBT focuses on changing individual cognitions and behaviors, qualitative studies of patients' perceptions are particularly relevant for understanding how the theory might translate into practice with different clinical groups (27, 28).
Significance & Innovations
Patients identified key cognitive–behavioral techniques and materials as crucial for facilitating behavior change (cognitive–behavioral therapy).
The group modality utilized peer support to enhance the acquisition of self-management skills (social cognition theory).
The benefits that patients gained from the fatigue program extended into wider life issues.
These data suggest that the incorporation of cognitive–behavioral approaches into patient education programs in clinical practice might enhance self-management.
PATIENTS AND METHODS
Inclusion criteria for the group CBT program were a confirmed diagnosis of RA (29), a score of ≥6 of 10 on a fatigue visual analog scale during the past week, and no change in major medication for 16 weeks (or 6 weeks for steroids). The program was facilitated by 2 of the authors (NA and BK) with groups of 4–9 patients recruited from 2 teaching hospitals in Bristol, UK. After the consolidation session at week 14, patients were invited to participate in a focus group to discuss their views and experiences of the program with researchers who had not been involved with its delivery (SH, CA, AC, AH, MM, or AS). Focus groups are practical for gathering evidence from large numbers of participants, and the interaction tends to be between participants with relatively little influence from the researchers (30, 31). Furthermore, the focus groups comprised the program groups, where participants were accustomed to discussing their experiences together. Ethics approval was granted by the North Somerset and South Bristol Research Ethics Committee (P6/Q2006/149) and written consent was obtained.
The interview schedule (Table 1) was devised by the steering group, with input from a patient research partner (KK). The focus groups were audio taped and transcribed verbatim. All of the data sets were analyzed by an independent researcher (ED), with a subset analyzed by 2 additional authors (SH and KK). A hybrid (deductive and inductive) thematic analysis was conducted based on the approach of Fereday and Muir-Cochrane (32). Codes that depicted patterns across the data sets and combined to form overarching themes with subthemes were generated, initially using a theory-driven approach followed by a data-driven analysis (Figure 1).
Of the 65 patients who participated in the program, 43 attended at least 6 of the 7 sessions. Of the 40 who attended their seventh (consolidation) session, 38 agreed to stay on for the focus group. Nine focus groups comprising 3–5 participants were held. Only 1 patient attended the group A consolidation session, and therefore had an individual interview; 2 patients attended the group B consolidation session but could not stay on for the focus group (Table 2). Three major themes were identified during analysis (Figure 2).
|Group||Patient ID||Sex||Age, years||Disease duration, years|
Theme 1: “they made us work it out ourselves.”
This theme captures elements of the program that patients identified as factors facilitating change, underpinned by subthemes of the process, metaphors and materials, working as a group, and barriers.
Process of guided discovery.
Patients found the guided discovery process, in which they responded to questions formulated by the therapists, an effective method for working out their self-management strategies:
“What I liked about the course, they didn't tell us, they made us work it out ourselves” (F06).
The exploration of fatigue in the context of their own lives was deemed more helpful than simply accessing information about the symptom:
“Well you can read all the things on the um internet, whatever, or read pamphlets about what the illness entails, but you don't know where you fit into it, you don't know how it's going to affect you” (E11).
“…it sticks very much in your mind instead of just reading the buzz words and not you know, not going through the thinking process as well” (H03).
The guided discovery process encouraged patients to consider new ways of thinking about their fatigue and its management using suggestions generated in the sessions, rather than direct advice by therapists:
“…You didn't sit at a lecture and be told how you should run your life, we discussed it between ourselves” (D09).
“They gave you like, you got ideas, you got ideas from it without being pushed into anything or feeling uneasy about it” (C10).
Therapists questioned patients' negative beliefs as part of getting them to reflect on their current situation and to identify what was happening and why. Gaining these insights was perceived as empowering, which was important for increasing patients' sense of control:
“We were challenged in a very gentle, professional way, we were challenged. But actually it did make me think about what I was doing and take responsibility actually” (D15).
Patients set their own behavior change goals centered on areas they identified as important and potentially achievable. Deciding on goals required some element of self-analysis, insight, and an understanding of the “problem” and how it might be helped:
“We're all totally different people with different lifestyles and so you try to reach those goals within your own lifestyle and I knew where mine um differed and I knew where mine needed to go” (M09).
“For me, it was taking time to see a friend. I just don't get out, when I'm in the house, I don't stop. I just keep going. I have to take time for myself” (L12).
As patients engaged with the process of guided discovery they were able to unpack their own thoughts and feelings, identify how they were driving their behaviors, and respond in a constructive way:
“The one that um helped me most was the one about pacing yourself throughout the day because I personally was on my own little personal guilt trip about feeling tired all the time, not finishing things properly and it wasn't until I came here and they started talking about pacing and really going in to it, that I realized that that's just what I wasn't doing” (H08).
Metaphors and visual materials.
Therapists used several metaphors during the program and focus groups discussed how these were effective for capturing patients' experiences and giving them a way of thinking about proactive responses to their fatigue.
Communication metaphor (picture of aggressive, confident, and passive people):
“The picture sort of stuck in my mind of this little submissive guy in the middle which was me and I thought a lot about that and I'm not like that at all now” (C11).
Pit metaphor (picture of a deep pit with a ladder leading out of it):
“We were told once you're in the bottom of that pit you have to build a ladder and then step by step you form a plan and climb out of it…” (F13).
“…that's how they described it to us…” (F05).
“…it works and I think as well it is something we are never going to forget” (F13).
Other materials mentioned included the Activity, Rest & Sleep Diary, where patients used a color code to record high and low activity, rest, sleep, and fatigue wipeout for every hour of every day each week. Although initially difficult to understand for some, by the end of the program the diaries had become a valuable tool. The visual record, broken down into hourly blocks, helped patients identify patterns in their behavior and see how these changed over time:
“When I first saw the chart I thought ‘I can't see the concept here.’ But wow! Within 3 days I was shocked, absolutely shocked and just carried on and it has made a massive difference” (JG01).
“We were given these flow charts to fill out and the blocks of red were high energy and they have all been reduced haven't they? Now we pace ourselves and take time out…” (F07).
Participants indicated that these materials might continue to be helpful:
“…and you could build on it at home…and some of them are so simple like the spades and the ladders and actually getting myself to think about what would, what did I recognize as a spade that was digging me deeper and what and who are my ladders?” (D15).
Working as a group.
Patients valued the opportunity to harness their collective experience and offer each other thoughts and ideas on strategies for coping with RA fatigue. Group members also provided emotional support related to the challenges of managing a long-term condition:
“You know it's just extremely useful being able to bounce things off other people and just see how they're managing it” (M02).
“The opportunity to meet as a group is important…” (E05).
“…because you don't feel that it's only you and you are in isolation” (E05).
However, patients explained that the benefits derived from attending as a group were not due solely to the peer support. The therapist's role in getting them to engage with fatigue-related issues was recognized as vital for making sessions constructive:
“They had to throw the ball into the court for us to pick it and what they have also had to do is stop us going off at a tangent” (KJ02).
“We couldn't have got through it on our own just talking about it on our own…” (F05).
“…we needed those guidelines…” (F13).
“…we may have pulled one another down in some cases” (F05).
Barriers to engagement and progress.
Patients who derived less benefit from the program were able to identify barriers to their engagement and progress. It was physically and mentally demanding to attend every week and participate, especially when symptoms were bad. The challenges could be exacerbated by the timing and length of the sessions:
“Yeah one thing I would say is because it maybe takes a lot out of people, for many, so I think it depends on how unwell they are with their rheumatoid arthritis, how aggressive it is and how they feel, to then to convince them to make…to come every week” (H03).
“Mornings are difficult, you have pain and you're stiff” (M09).
“It's quite a long time for people with arthritis to sit in one position on one chair too in some of these sessions…” (EC03).
Some materials were not as useful as they might have been, in particular the relaxation CD:
“There are better relaxation tapes; there are better guided visualization tapes” (M02).
Some participants indicated that engaging with CBT and learning new skills could be difficult:
“…he would be asking us questions…and my brain was totally blank because then I kept thinking, ‘Try and understand what he's talking about’ you know? But it does fall into place” (C11).
Theme 2: “feeling much better about yourself and coping much better.”.
This theme describes the nature of changes that patients made as they started to manage their fatigue, underpinned by subthemes of being analytical, gaining emotional control, coping skills, and acceptance of RA fatigue.
Learning to be more analytical.
Taking part in the program enabled patients to think more clearly and dispassionately about their RA fatigue:
“Learning from my own experiences and just analyzing that in a very different way…so it sort of gave me a bit of a distance actually, and a bit of a capacity to be um slightly, well slightly more analytical about it” (M02).
By the end of the program patients described a clearer understanding of the symptom, enhanced problem-solving skills, and a new way of responding to inevitable challenges:
“Until you understand it you don't know how to stop it do you, you don't know how to handle it like properly” (F13).
“You analyze these things and then you can turn them around and make them work differently” (C10).
“I do things in a much more calculated way, that doesn't mean to say I have a sterile life, you know without any surprises. But things are done in a much more measured fashion instead of like a bull in a china shop” (K08).
Gaining emotional control.
Validating RA fatigue in the group led to a reduction in unhelpful feelings of guilt and a fear of becoming fatigued:
“I don't feel guilty because I don't call myself lazy anymore” (M09).
“I think I was very scared of the fatigue bit before because I don't think I really understood it, I'm not so scared of it [fatigue] now” (D15).
Patients experienced a range of emotional changes, including becoming less volatile. They were able to make links between negative emotions and the impact on daily life:
“I was quite fiery but I've calmed down” (C13).
“That's another thing the anger has gone as well hasn't it?” (F13).
“Yes the frustration and the anger” (F05).
“You've got it [RA fatigue], you have got to live with it and be positive about it and get on with it, otherwise you go back into the bottom of the pit again” (F13).
Cognitive and emotional changes enhanced self-efficacy, which improved coping skills:
“Feeling much better about yourself and coping much better with your condition” (H08).
“You might not be able to control the fatigue, you know that's going to be there, it's the feature of this condition but you can control how you manage it” (M02).
“There are strategies that you can use and it does then have a spin-off on the rest of your life” (E05).
Greater acceptance of RA and fatigue.
There was an acceptance that RA fatigue is not a “curable” symptom and the patients' task was to manage its negative impact:
“You're never going to get back to optimum health because optimum health is actually a myth” (D15).
“…fatigue is very much part and parcel of this condition and what the course has done is put perspective on that and also an acceptance” (H08).
Theme 3: “my life has changed so much it's unbelievable.”.
This theme describes benefits beyond fatigue, underpinned by subthemes of better communication leading to improved personal relationships and reengagement in valued activities.
A positive benefit for several patients was improved communication skills. Whereas before they had not talked about how their fatigue affected them, they now felt able to assert their own needs:
“I think my friends and family, I would try and keep going and keep up with them instead of telling them about my illness and how I might feel, but now I do… . And that's how I am with my family a lot, that has brought us quite a lot closer together” (A03).
Reengagement in previously abandoned activities.
Patients could see the changes in each other, and mutual encouragement became a useful part of the group process as members reengaged in valued activities they had previously abandoned because of fatigue:
“I feel we are all much more outgoing aren't we?” (F13).
“Mmm more positive…” (F05).
“And I have gone back to sewing, I do a lot of machine embroidery, patchwork, and so on” (F07).
Many patients discussed the benefits of increased social participation and leading more active lives. This renewed enjoyment was often attributed to greater self-confidence:
“I do more, going and meeting new people as well and that's really good” (H03).
“My confidence has gained and I have started doing things that I now enjoy like the jewelry business” (H07).
Wide-ranging changes were experienced not only by patients but also by those close to them:
“My life has changed so much it's unbelievable, I feel so much better” (A03).
“…it's made a massive difference to me, to my whole family, the whole family so it's positive” (JG01).
This study explored the patient's perspective of taking part in a program for the self-management of RA fatigue. Patients spontaneously described fundamental elements of CBT as facilitating their behavior changes (theme 1). Patients were aware of their proactive role in the process and how it differed from receiving information in a didactic manner. They valued an approach that was highly individualized and allowed them to apply what they learned to their own lives, enhancing their sense of control. A clear message in relation to the program materials was the power of visual metaphors, an established practice in CBT to enhance information processing by transforming therapeutic information into a form that is easy to remember (33). This information could potentially be recalled and applied in everyday contexts when it is relevant and helpful. Patients were also motivated by the feeling of group support. This sense of group encouragement and sharing in each others' experiences over the 6 weeks was vividly captured in the data and supports the SCT about why the group modality can be effective. The group setting can be a safe place in which to pursue change, with fellow members providing a credible source of persuasion, validation, and legitimization of each others' experiences (21, 22). While patients benefited from the group interaction, they acknowledged that steering by the therapists to focus on fatigue-related topics and self-learning elements was central to the program's effectiveness. Qualitative studies with other clinical populations have also found that although patients valued peer support, the process of guided discovery and a structured content generated additional benefits (34, 35). These data illustrate the “active ingredients” of the program from the patient perspective.
Theme 2 demonstrates an enhanced sense of self-efficacy brought about by the processes of becoming more analytical, gaining emotional control, learning helpful strategies (such as activity pacing), and feeling more able to problem solve. These changes are examples of cognitive restructuring, a central tenet of CBT. For several patients, a greater acceptance of RA and fatigue lay at the heart of their new approach to self-management. Moving from waiting for an external “cure” (e.g., a magic tablet) to a position of acceptance and understanding of the possibility of self-help has also been shown in other studies of group CBT for people with long-term conditions (36, 37). This fits with the CBT aim of shifting patients' responses to symptoms from passive to active, as they are acknowledging that fatigue will not be cured but can be managed. These findings further support the recommendation that approaches such as CBT are more effective than straightforward self-management “education” (24). Patients' perceptions about “active ingredients” for behavior change may be pertinent to busy clinicians aiming to help RA patients make behavior changes regarding medication, exercise, smoking, or pacing activities.
In theme 3, participants highlighted changes that went beyond the self-management of fatigue. Reengagement with valued activities, improved communication, and confidence in social settings and greater enjoyment of life were important outcomes of the program from the patient's perspective. This reflects a central assumption of the program; specifically, when a patient is overwhelmed by fatigue and unable to cope, the effects will ripple out and impact all areas of daily life. What is unclear is the extent to which these far-reaching benefits came about because patients were better able to manage a pervasive symptom that affected many aspects of their lives or because the CBT skills acquired in the program were then applied to the self-management of other symptoms (e.g., pain).
This study was limited to a single CBT intervention for RA fatigue, and as such does not permit claims in relation to the other educational interventions. The recruitment process meant that of the 65 patients who had taken part, only the 43 who completed the program and attended the final consolidation session were invited to the focus groups. This raises the potential for sampling bias, as those who did not complete might have had different experiences and views (e.g., found aspects of CBT ineffective or difficult); therefore, future research might explore such barriers. Finally, the focus groups took place immediately after the consolidation session, and had they been held at a different time, other issues might have been recalled.
Patients highlighted that CBT elements were key to making behavior changes. This supports recommendations based on quantitative studies that self-management programs be underpinned by CBT/SCT approaches, not information alone. Most clinical teams lack a clinical psychologist; therefore, training clinical teams in cognitive–behavioral approaches to deliver fatigue self-management programs is currently being developed and should be subject to an RCT.
All authors were involved in drafting the article or revising it critically for important intellectual content, and all authors approved the final version to be published. Dr. Dures had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.
Study conception and design. Dures, Kitchen, Almeida, Ambler, Cliss, Hammond, Knops, Morris, Swinkels, Hewlett.
Acquisition of data. Almeida, Ambler, Cliss, Hammond, Hewlett.
Analysis and interpretation of data. Dures, Kitchen, Ambler, Morris, Swinkels, Hewlett.
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