Emma Dures

Fatigue in rheumatoid arthritis: time for a conceptual model

In recent years, formal collaboration with RA patients has explored what treatment outcomes are important to them. Patients repeatedly raise concerns about the major impact of RA fatigue. Qualitative research, replicated internationally, shows that patients with RA experience fatigue as uncontrollable and overwhelming yet find it largely ignored by clinicians [1]. Fatigue is highly prevalent in RA (up to 70% of patients), is as severe and frequent as pain [2] and is consistently prioritized by patients within their top outcome priorities, often as high or higher than pain [3]. Fatigue data also provide information about disease activity that is additional to that measured by the current ACR core set variables [4]. All these findings led to an international consensus at OMERACT in 2006 that fatigue should be measured in all clinical trials in addition to the core set [4]. Fatigue measurement is now recommended for other core data sets in Europe [RA Impact of Disease (RAID)], the UK [RA Patient Priorities for Pharmacological Interventions (RAPP-PI)] and the USA (ACR/EULAR recommendation for assessing remission). However, evidence on the causality of fatigue in RA is conflicting and derived mainly from cross-sectional studies using generic or less-robust fatigue patient-reported outcome measures [5]. In order to clarify which research questions will be most informative in identifying causal pathways for fatigue in RA, and to develop potential interventions, a conceptual framework of RA fatigue is now essential. We propose a conceptual model for RA fatigue (Fig. 1) that suggests interactions between three factors: disease processes (RA), thoughts, feelings and behaviours (cognitive, behavioural) and personal life issues (personal). RA disease factors (Fig. 1) that might drive fatigue include de-conditioning and actual or perceived increased muscle effort (resulting from joint damage, disability and reduced physical activity), anaemia, RA medication and sleep that is disturbed by RA pain [1, 5]. Joint damage, disability and pain emanate from the inflammatory processes of RA. Inflammatory processes may be associated with an abnormal cortisol response via the hypothalamic pituitary adrenal (HPA) axis [6], which might explain the sudden, dramatic and unpredictable wipe-out episodes reported by many RA patients [1]. The cognitive and behavioural factor (Fig. 1) is a recognized dynamic model that demonstrates interactions between thoughts (e.g. I should be able to do all the activities I used to do), feelings (e.g. sad that I am struggling to keep up activities), behaviours (e.g. keep going until I finish this activity) and symptoms (I kept going until completely wiped out with fatigue) [7]. RA studies show that illness beliefs that RA has serious consequences, low self-efficacy and low mood all predict future RA fatigue [8]. Behavioural issues such as persisting with prolonged physical activity until exhaustion supervenes (boom and bust) or resting excessively may also influence fatigue. Personal factors that potentially influence RA fatigue (Fig. 1) include personal responsibilities that are important for an individual (e.g. going to work to earn income, caring for family members), unhelpful personal environments (e.g. stairs, lack of assistive devices) and social support that is either unhelpful or has been lost. Health issues such as comorbidities (e.g. diabetes, cardiac disease), dietary patterns (poor nutrition, gaps between meals) and age or gender, may be influential. These variables may either predispose to fatigue (e.g. diagnosis of RA), precipitate a specific fatigue episode (e.g. a poor night’s sleep) [5] or perpetuate existing fatigue (e.g. accepting social invitations despite knowing you are too fatigued). However, many may do all three—for example, previous depression predisposes to future RA fatigue and current depression is related to or precipitates current fatigue [5], but depression may also affect behaviours that perpetuate fatigue (e.g. withdrawal from physical activities, leading to de-conditioning). Our proposed model is therefore dynamic, with bi-directional arrows suggesting inter-relationships between and within the three factors (RA, cognitions and behaviours, and personal). For example, it is clear that the thoughts, behaviours and emotions associated with fatigue are related (at least in part) to the consequences of having RA in the first place, and all elements must be set within the context of personal life (e.g. an inflammatory flare is fatiguing because an individual has to work to provide an income, and cannot accept fatigue as a valid reason to take sick leave). There are few published trials that specifically aimed to improve RA fatigue. However, some interventions that are primarily aimed at improving other variables in the model, also reduce fatigue: pharmacological interventions to reduce inflammation, exercise interventions to improve physical activity and cognitive behavioural therapy (CBT)

Mixed Methods in Health Psychology Theoretical and Practical Considerations of the Third Paradigm

This article has two purposes: to examine why mixed methods is a legitimate approach particularly well suited to health psychology; and to describe the challenges inherent in conducting mixed methods research. First, arguments justifying the status of mixed methods as a third paradigm alongside solely quantitative and qualitative frameworks are discussed. Second, a qualitatively driven model of mixed methods is illustrated using examples from a research programme exploring the psychosocial impact of a rare, genetic skin disorder. The flexibility of a mixed methods approach enables the researcher to be responsive to a range of issues, but it is important the approach is used thoughtfully and appropriately.

The Psychosocial Impact of Epidermolysis Bullosa

Epidermolysis bullosa (EB) is a disease in which the skin blisters in response to minimal friction, causing painful wounds. Despite the potentially severe nature of epidermolysis bullosa, research on the psychosocial issues is scarce. The aims of the study were to explore the psychosocial impact of epidermolysis bullosa on affected adults and to identify associated support needs. We collected data using semistructured interviews and employed inductive thematic analysis to organize and analyze them. Three main themes—beliefs about containing the impact of EB, understandings of the disease, and the disabling impact of EB—describe the ways in which living with EB influences the daily lives of participants at intraindividual, interindividual, and sociocultural levels. The associated support needs ranged in type and intensity, from a preference for brief, skills-based interventions and the facilitation of peer support through to longer-term specialist psychological support. The results highlight how the particular combination of the rarity of the disease, its lifelong and hereditary nature, and its disfiguring impact on the skin differentiate epidermolysis bullosa from other chronic conditions.

The Impact Triad (Severity, Importance, Self-management) as a Method of Enhancing Measurement of Personal Life Impact of Rheumatic Diseases

Clinical trials in rheumatoid arthritis (RA) currently focus on measuring severity of functional disability, patient global assessment, pain, and morning stiffness1. However, the inclusion of patient-reported outcome measures (PROM) to assess the impact of illness has been recognized as an important development, and collaboration with patients in developing PROM is becoming mandatory2. While it is recognized that patients and professionals may have different values and priorities3, discussion continues about how to incorporate outcomes that are important to patients. Recent collaborations with patients in the conception of outcome measures have revealed 3 aspects of impact that require assessment. These are the severity of an outcome, its importance to the patient, and patient ability to self-manage (Figure 1). We provide 3 examples of how this impact triad emerged in recent RA research and discuss how the concept may influence the development of future instruments. Figure 1. The impact triad. The first example comes from extensive focus group data exploring a patient definition of flare in RA4. The emergent definition included 3 components: as symptom intensity increased (i.e., severity), symptoms were sufficiently different from normal background variations (i.e., became important), and the actions patients took to deal with them failed (i.e., self-management). This resulted in a tipping point being reached where medical help was sought for uncontrolled flare. The patients’ complex model of flare goes beyond a simple increase in the number of swollen joints or the intensity of pain, to include these additional considerations. Therefore, the future development of a flare instrument will require not only items on the severity of flare-related symptoms, but also items on how these are different from patients’ perceptions of normal background symptoms and items on the controllability of symptoms. The second example comes from the development of a set of … Address correspondence to Prof. S.E. Hewlett, Academic Rheumatology, Bristol Royal Infirmary, Bristol BS2 8HW. E-mail: Sarah.Hewlett{at}uwe.ac.uk

“They didn't tell us, they made us work it out ourselves”: Patient perspectives of a cognitive–behavioral program for rheumatoid arthritis fatigue†

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.

Cognitive-behavioural approaches to self-management in rheumatic disease

Patients with rheumatic disease must adjust psychosocially and behaviourally in order to manage the impact of symptoms and treatment on their daily lives, and the emotional consequences of the disease. However, patients can improve their well-being by taking a proactive role in self-management, for example by using coping strategies. Support for patient self-management from clinical teams usually comprises information and advice on disease management; however, this largely didactic approach often focuses on the biomedical aspects of rheumatic disease, without addressing how these aspects interact with psychosocial factors to influence health behaviours and thus outcomes. A cognitive–behavioural approach based on the biopsychosocial model of rheumatic disease can facilitate the identification of effective self-management strategies through collaboration between patients and clinicians. Most patients do not require intense cognitive–behavioural therapy from a clinical psychologist; rather, basic cognitive–behavioural techniques and tools could be used by rheumatology clinical teams to expand and enhance the support already offered to patients.

Patient perspective workshop: moving towards OMERACT guidelines for choosing or developing instruments to measure patient-reported outcomes

The workshop Choosing or Developing Instruments held at the Outcome Measures in Rheumatology (OMERACT) 10 meeting was designed to help participants think about the underlying methods of instrument development. Conference pre-reading material and 3 brief introductory presentations elaborated the issues, and participants broke into discussion groups before reconvening to share insights, engage in a more general discussion of the issues, and vote on recommendations. Tradeoffs between using current imperfect measures and the long and complex process of developing new instruments were considered, together with the need for rigor in patient-reported outcome (PRO) instrument development. The main considerations for PRO instrument development were listed and a research agenda for action produced. As part of the agenda for action, it is recommended that researchers and patient partners work together to tackle these issues, and that OMERACT bring forward proposals for acceptable instrument development protocols that would meet an enhanced “Truth” statement in the OMERACT Filter.

Patient preferences for psychological support in inflammatory arthritis: A multicentre survey

Objectives Inflammatory arthritis (IA) can lead to anxiety, depression, pain and fatigue. Psychological support can improve quality of life and self-management; and European and American guidelines recommend support be offered. This study examined patient views on psychological support for their IA. Methods A questionnaire designed by researchers, patient partners and clinicians was administered to 2280 patients with IA. Results 1210 patients responded (53%): 74% women; mean age 59 years (SD 12.7); patient global 5 (2.3); disease duration <5 years (41%), 5–10 (20%), >10 (39%). Only 23% reported routinely being asked about social and emotional issues by a rheumatology professional, but 46% would like the opportunity to discuss psychological impact. If offered, 66% of patients reported they would use a self-management/coping clinic (63% pain management, 60% occupational therapy, 48% peer support groups, 46% patient education, 46% psychology/counselling). Patients want support with managing the impact of pain and fatigue (82%), managing emotions (57%), work and leisure (52%), relationships (37%) and depression (34%). Preferences are for support to be delivered by the rheumatology team (nurse 74%, doctor 55%) and general practitioners (GPs) (51%). Only 6% of patients stated that social and emotional issues were not relevant. Conclusions Demand for psychological support is high; however, less than a quarter of patients reported being asked about social and emotional issues, suggesting a gap between needs and provision. The preference is for delivery from rheumatology clinicians and GPs, and research should establish whether they have the skills and resources to meet patients’ needs.

Reliability and sensitivity to change of the Bristol Rheumatoid Arthritis Fatigue scales

OBJECTIVE To examine the reliability (stability) and sensitivity of the Bristol Rheumatoid Arthritis Fatigue scales (BRAFs) and patient-reported outcome measures (PROMs) developed to capture the fatigue experience. The Multi-Dimensional Questionnaire (BRAF-MDQ) has a global score and four subscales (Physical Fatigue, Living with Fatigue, Cognitive Fatigue and Emotional Fatigue), while three numerical rating scales (BRAF-NRS) measure fatigue Severity, Effect and Coping. METHODS RA patients completed the BRAFs plus comparator PROMs. Reliability (study 1): 50 patients completed questionnaires twice. A same-day test-retest interval (minimum 60 min) ensured both time points related to the same 7 days, minimizing the capture of fatigue fluctuations. Reliability (study 2): 50 patients completed the same procedure with a re-worded BRAF-NRS Coping. Sensitivity to change (study 3): 42 patients being given clinically a single high dose of i.m. glucocorticoids completed questionnaires at weeks 0 and 2. RESULTS The BRAF-MDQ, its subscales and the BRAF-NRS showed very strong reliability (r = 0.82-0.95). BRAF-NRS Coping had lower moderate reliability in both wording formats (r = 0.62, 0.60). The BRAF-MDQ, its subscales and the BRAF-NRS Severity and Effect were sensitive to change, with effect sizes (ESs) of 0.33-0.56. As hypothesized, the BRF-NRS Coping was not responsive to the pharmaceutical intervention (ES 0.05). Preliminary exploration suggests a minimum clinically important difference of 17.5% for improvement and 6.1% for fatigue worsening. CONCLUSION The BRAF scales show good reliability and sensitivity to change. The lack of BRAF-NRS Coping responsiveness to medication supports the theory that coping with fatigue is a concept distinct from severity and effect that is worth measuring separately.

Stiffness is more than just duration and severity: a qualitative exploration in people with rheumatoid arthritis

Objective. Stiffness is internationally recognized as an important indicator of inflammatory activity in RA but is poorly understood and difficult to measure. The aim of this study was to explore the experience of stiffness from the patient perspective. Methods. Semi-structured interviews conducted with 16 RA patients were analysed independently by researchers and pat.ient partners using inductive thematic analysis. Results. Six themes were identified. Part of having RA identified stiffness as a normal consequence of RA, perceived as associated with disease-related aspects such as fluctuating disease activity, other RA symptoms and disease duration. Local and widespread highlighted stiffness occurring not only in joints, but also over the whole body, being more widespread during the morning or flare. Linked to behaviour and environment illustrated factors that influence stiffness, including movement, medications and weather. Highly variable captured the fluctuating nature of stiffness within and between patients and in relation to temporality, duration and intensity. Impacts on daily life emphasized the effect of stiffness on a range of domains, including physical function, quality of life, psychological well-being, activities of daily living and participation in work and leisure activities. Requires self-management detailed self-management strategies targeting both the symptom and its consequences. Conclusion. Patients’ experiences of stiffness were varied, complex and not exclusive to the morning period. Importantly, stiffness was reported in terms of impact rather than the traditional measurement concepts of severity or duration. Based on these findings, further research is needed to develop a patient-centred measure that adequately reflects inflammatory activity.