Understanding Fatigue-Related Disability in Rheumatoid Arthritis and Ankylosing Spondylitis: The Importance of Daily Correlates.

OBJECTIVE: Fatigue is common among people with inflammatory arthritis but is hard to manage. The aim of this study was to investigate how daily fluctuations in psychological variables correspond with changes in fatigue-related disability in the daily lives of people with inflammatory arthritis and to identify factors to target in psychological interventions and routine clinical practice. METHODS: A cohort of 143 patients with rheumatoid arthritis (n = 97) or ankylosing spondylitis (n = 46) participated in a 10-day online diary study. Each evening participants completed a diary questionnaire assessing their fatigue, pain, fatigue-related disability, and 4 components of psychological flexibility (valued activity, mindfulness, cognitive fusion, and fatigue avoidance). RESULTS: On days when participants were more engaged in valued activities or more mindful, they reported less disability due to fatigue, even when controlling for levels of fatigue and pain that day. The daily psychological flexibility variables explained a total of 15.6% of the variance in daily fatigue-related disability. CONCLUSION: Psychological flexibility variables are directly associated with fatigue-related disability in the daily lives of inflammatory arthritis patients. Further research is needed to investigate whether interventions that target psychological flexibility are effective at reducing fatigue-related disability.

Exploring the role of online health information and social media in the illness experience of arthritis-related fatigue: A focus group study.

PURPOSE: Online health information (OHI) and social media have become prominent health resources for people with arthritis-related fatigue. More research is needed to understand how OHI and online social support may influence illness experiences and patient-practitioner relationships in people with arthritis-related fatigue. The present study aimed to explore how OHI and social media shape these experiences by using an inductive qualitative analysis. METHOD: Seven focus groups were conducted with 21 participants aged 28-77 diagnosed with a range of rheumatic diseases. Within the focus groups, participants were asked questions about OHI, online social support and the role of OHI in their health care. The focus groups were recorded, transcribed and analysed using a combination of interpretative phenomenological analysis (IPA) and thematic analysis. RESULTS: The analysis resulted in three themes: (a) how online social support changes illness experiences, (b) communicating fatigue to health professionals using OHI and (c) health care experiences online. These themes provide insight into the ways people with arthritis-related fatigue benefit from online social support, use OHI to support communication with health professionals and how they share health care for arthritis in online spaces. CONCLUSION: This research expanded on previous literature addressing the role of OHI and social media in the illness experience of arthritis-related fatigue. As technology use is increasing, particularly in the current extraordinary environment of social distancing, it is critical to address the role of OHI and social media in health care. In this study, OHI and social media played a prevalent role in the health care of many participants.

Acceptance and commitment therapy for people with rheumatic disease: Existing evidence and future directions.

INTRODUCTION: Despite advances in the management of rheumatic diseases, many patients experience persistent pain and fatigue. Psychological interventions are useful adjunctive treatments, but improvements tend to be small, and progress in this area is needed. The aim of this review was to evaluate the effectiveness of acceptance and commitment therapy (ACT) for the treatment of chronic pain and fatigue in patients with rheumatic disease. METHODS: A systematic literature search was conducted in MEDLINE, EMBASE, and PsycINFO for randomised controlled trials (RCTs) of ACT for the treatment of chronic pain and fatigue in patients with rheumatic disease. Ten RCTs that included people with rheumatic disease were identified, rated for risk of bias, and summarised in terms of effects on relevant outcomes (disability, emotional functioning, pain, and quality of life). RESULTS: Treatment with ACT was associated with improvements in physical and emotional functioning, pain, and quality of life in chronic pain patients. The favourable effects of ACT were evident when compared with those of treatment as usual or active control conditions (e.g., pain education and novel medication). There was consistent evidence to show that ACT is beneficial in improving physical and emotional functioning in patients with fibromyalgia but a lack of evidence pertaining to patients with other forms of rheumatic disease. CONCLUSION: ACT provides benefit for fibromyalgia patients. Further high-quality research is needed to develop ACT interventions for people with inflammatory rheumatic diseases and to evaluate their effectiveness for managing the pain and fatigue associated with these conditions.

Optimising daily diary questionnaires about fatigue, psychological flexibility and well-being: perspectives of people with rheumatic disease.

OBJECTIVES: The aim of this study was to understand the perspectives of people with rheumatic disease have about completing a pilot daily diary questionnaire on fatigue and well-being, with the objective of incorporating these perspectives into future daily studies. METHODS: Twenty-two participants with experience of rheumatic disease-related fatigue attended a focus group and/or an individual interview. Before the focus group or interview, participants completed a one-off quantitative diary about their fatigue and well-being that day. In the focus groups and interviews, participants were asked about their experience completing the questionnaire. Data were analysed using inductive thematic analysis. RESULTS: Three themes were identified. 'Concerns about Misinterpretation and Ambiguity' addressed the elements of the diary questionnaire that were confusing or unclear to participants. 'Desire to Provide Useful and Accurate Information' outlined participants' uncertainty about how to report complex daily experiences. 'Gaining Personal Insight through Diaries' revealed the personal benefits participants gained, particularly the development of insight into their fatigue. CONCLUSIONS: People with rheumatic disease are willing to complete a daily diary questionnaire, but emphasise it is important for diary questionnaires to have clear instructions, questionnaire items and response scales. Addressing these concerns will ensure the reliability and validity of quantitative diary data.

Is avoidance of illness uncertainty associated with distress during oncology treatment? A daily diary study.

OBJECTIVE: The aim of this study was to explore the daily relationship between illness uncertainty, avoidance of uncertainty, well-being and treatment-related distress among patients with cancer receiving treatment with curative intent. It was hypothesised that daily illness uncertainty, daily avoidance of uncertainty and daily treatment-related distress would be negatively associated with daily well-being. It was also hypothesised that daily illness uncertainty and daily avoidance of uncertainty would be positively associated with daily treatment-related distress. DESIGN: Thirty-one patients receiving oncology treatment with curative intent completed a daily diary for seven consecutive days. Data were analysed using multilevel modelling. MAIN OUTCOME MEASURES: Daily illness uncertainty, avoidance of illness uncertainty, treatment-related distress and well-being. RESULTS: As hypothesised, on days when patients with cancer reported heightened treatment-related distress they experienced diminished well-being. And on days when patients reported more experiential avoidance of illness uncertainty, they also experienced heightened levels of treatment-related distress. No other daily associations were significant. CONCLUSION: These findings indicate that patients with cancer experience day-to-day fluctuations in distress and well-being throughout oncology treatment. Avoidance of illness uncertainty-related thoughts and/or emotions are associated with daily distress, but not daily well-being.

"I actually just really need to stop work sometimes": Exploring fatigue-related barriers to employment among people with rheumatic diseases.

PURPOSE: Fatigue is a common symptom of many rheumatic diseases (RDs), but more research is needed to explore the experience of fatigue and its impact on employment among people with RDs. The aim of the present study was to investigate experiences of fatigue, its impact on employment and strategies that people with RD use to continue working. METHOD: Semi-structured in-depth interviews were conducted with five participants with a range of RDs living in New Zealand (three women, two men; aged 45-64 years). All participants were employed part time at the time of the interview. The transcripts were subjected to inductive thematic analysis, led by the first author, who had an RD. RESULTS: Four themes resulted from the analysis: (a) workplace management and coping strategies; (b) the function of positive workplace relationships; (c) barriers to understanding; and (d) collectively improving understanding. These themes act to explain how individuals with RDs in employment believe fatigue to have a bearing on their work, how they manage fatigue at work, how they believe coworkers and employers perceive and manage their fatigue, and what they believe could improve the understanding of fatigue in workplaces. CONCLUSIONS: Individuals with RDs in employment describe fatigue as playing a substantial role in their experiences at work. This research expands on previous literature addressing barriers to employment in those with RDs by specifically addressing the relevance of fatigue. It is imperative to provide information to employers, and guidelines for employees with an RD who are experiencing fatigue should outline appropriate strategies for success at work.

The role of enjoyment in exercise for people with arthritis: Four different viewpoints from a Q-methodology study.

PURPOSE: There is limited research on the role of enjoyment of exercise among people with arthritis. The aim of the present study was to determine distinct viewpoints on exercise held by people with arthritis, and how enjoyment features in these viewpoints. METHODS: A Q-methodology study was conducted, which involved two interviews with people with rheumatoid arthritis, osteoarthritis or ankylosing spondylitis (aged 20-85 years). In the first interviews, 11 participants helped to create the Q-set, a set of statements reflecting a range of existing views on exercising. In the second interviews, 12 participants (nine of the 11 from the first interviews and three others) ranked the Q-set on a forced quasi-normal distribution of agreement. A Q-method factor analysis was carried out to determine groupings of participants with similar views on exercise. RESULTS: Four groupings were discovered, and defined in terms of rankings of statements and illustrative quotes from the ranking procedure. The first grouping had all changed their exercise habits after diagnosis with arthritis. The second grouping had a shared enjoyment for walking to stay healthy. The third grouping's viewpoints focused on knowledge about how much exercise they should carry out. The fourth grouping shared a sense of importance of being responsible for their health by exercising. CONCLUSION: These findings provide information about the role that enjoyment plays in motivating people with arthritis to exercise, although enjoyment of exercise was not expressed by all participants. People with arthritis who share these viewpoints on exercise enjoyment may require different forms of advice regarding feasible and enjoyable exercise.

Fatigue and mood among people with arthritis: Carry-over across the day.

OBJECTIVE: The present study examined the within-day relationship between fatigue and positive and negative mood among adults with rheumatoid arthritis (RA) or osteoarthritis (OA). METHOD: A sample of 142 adults-70 with RA and 72 with OA (67.6% women, 32.4% men)-completed daily diaries during 4 fixed time windows per day for 7 days. In each diary, participants reported fatigue, pain, happiness, and frustration. Multilevel modeling tested the temporal patterns in fatigue across the day and the lagged associations between fatigue and subsequent mood (and vice versa). RESULTS: Fatigue showed a midmorning dip followed by a linear rise in the afternoon and evening. Higher fatigue earlier in the day predicted subsequently lower happiness and higher frustration. Higher frustration-but not happiness-predicted subsequently worse fatigue. These within-day patterns were significant even when controlling for daily sleep quality, daily physical activity, diagnosis, age, gender, anxiety, depression, and disability. CONCLUSIONS: There was a unidirectional effect of fatigue on subsequent happiness and a bidirectional relationship between fatigue and frustration within the same-day for adults with RA or OA. These findings inform interventions for the management of mood and fatigue throughout the day and suggest that addressing fatigue could improve mood, and that addressing sources of frustration could improve fatigue among people with arthritis.