Objective. Fatigue is commonly reported by patients with rheumatoid arthritis (RA) but is rarely a treatment target. The aim of this study was to explore the concept of fatigue as experienced by patients with RA. Methods. Fifteen patients with RA and fatigue (>7 on a 10-cm visual analog scale) were individually interviewed and asked about the description, cause, consequence, and management of fatigue. Transcripts were systematically analyzed by 2 researchers independently, relevant phrases were coded, and earlier transcripts were checked for the emerging codes. A random sample of analyses were independently reviewed. A total of 191 codes arising from the data were grouped into 46 categories and overarching themes. Results. Vivid descriptions reflect 2 types of fatigue: severe weariness and dramatic overwhelming fatigue. RA fatigue is different from normal tiredness because it is extreme, often not earned, and unresolving. Participants described physical, cognitive, and emotional components and attributed fatigue to inflammation, working the joints harder, and unrefreshing sleep. Participants described far-reaching effects on physical activities, emotions, relationships, and social and family roles. Participants used self-management strategies but with limited success. Most did not discuss fatigue with clinicians but when they did, they felt it was dismissed. Participants held negative views on the management of fatigue. Conclusion. The data show that RA fatigue is important, intrusive, and overwhelming, and patients struggle to manage it alone. These data on the complexity of fatigue experiences will help clinicians design measures, interventions, and self-managment guidance.

ObjectivesTo investigate the effect of group cognitive behavioural therapy (CBT) for fatigue self-management, compared with groups receiving fatigue information alone, on fatigue impact among people with rheumatoid arthritis (RA).MethodsTwo-arm, parallel randomised controlled trial in adults with RA, fatigue ≥6/10 (Visual Analogue Scale (VAS) 0–10, high bad) and no recent change in RA medication. Group CBT for fatigue self-management comprised six (weekly) 2 h sessions, and consolidation session (week 14). Control participants received fatigue self-management information in a 1 h didactic group session. Primary outcome at 18 weeks was the impact of fatigue measured using two methods (Multi-dimensional Assessment of Fatigue (MAF) 0–50; VAS 0–10), analysed using intention-to-treat analysis of covariance with multivariable regression models.ResultsOf 168 participants randomised, 41 withdrew before entry and 127 participated. There were no major baseline differences between the 65 CBT and 62 control participants. At 18 weeks CBT participants reported better scores than control participants for fatigue impact: MAF 28.99 versus 23.99 (adjusted difference −5.48, 95% CI −9.50 to −1.46, p=0.008); VAS 5.99 versus 4.26 (adjusted difference −1.95, 95% CI −2.99 to −0.90, p<0.001). Standardised effect sizes for fatigue impact were MAF 0.59 (95% CI 0.15 to 1.03) and VAS 0.77 (95% CI 0.33 to 1.21), both in favour of CBT. Secondary outcomes of perceived fatigue severity, coping, disability, depression, helplessness, self-efficacy and sleep were also better in CBT participants.ConclusionsGroup CBT for fatigue self-management in RA improves fatigue impact, coping and perceived severity, and well-being.Trial registration: ISRCTN 32195100

Objective. 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. Methods. 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. Results. 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. Conclusion. 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.

To advance justice, equity, diversity, and inclusion in science, we must first understand and improve the dominant-culture frameworks that impede progress and, second, we must intentionally create more equitable models. The present authors call ourselves the ICBOs and Allies Workgroup (ICBOs stands for independent community-based organizations), and we represent communities historically excluded from the sciences. Together with institutional allies and advisors, we began our research because we wanted our voices to be heard, and we hoped to bring a different perspective to doing science with and not on communities. We created a community framework to guide our research and we led all aspects of our work, from creating research protocols to analyzing and interpreting the data to disseminating the results. We share our research framework, methods, and results so that science institutions can better understand how to intentionally create more equitable research partnerships with our communities.