Christina Bode

Fatigue and Factors Related to Fatigue in Rheumatoid Arthritis: A Systematic Review

Although patients with rheumatoid arthritis (RA) experience fatigue, little is known about its causes and consequences, and a fully developed theoretical model explaining the experience of fatigue in RA is lacking. Our goal was to systematically review studies in RA that examined factors related to fatigue to gain more insight into its possible causes and consequences.

EULAR recommendations for patient education for people with inflammatory arthritis

Objectives The task force aimed to: (1) develop evidence-based recommendations for patient education (PE) for people with inflammatory arthritis, (2) identify the need for further research on PE and (3) determine health professionals’ educational needs in order to provide evidence-based PE. Methods A multidisciplinary task force, representing 10 European countries, formulated a definition for PE and 10 research questions that guided a systematic literature review (SLR). The results from the SLR were discussed and used as a basis for developing the recommendations, a research agenda and an educational agenda. The recommendations were categorised according to level and strength of evidence graded from A (highest) to D (lowest). Task force members rated their agreement with each recommendation from 0 (total disagreement) to 10 (total agreement). Results Based on the SLR and expert opinions, eight recommendations were developed, four with strength A evidence. The recommendations addressed when and by whom PE should be offered, modes and methods of delivery, theoretical framework, outcomes and evaluation. A high level of agreement was achieved for all recommendations (mean range 9.4–9.8). The task force proposed a research agenda and an educational agenda. Conclusions The eight evidence-based and expert opinion-based recommendations for PE for people with inflammatory arthritis are intended to provide a core framework for the delivery of PE and training for health professionals in delivering PE across Europe.

Het meten van proactieve copingvaardigheden

SummaryMeasuring proactive coping. Psychometric characteristics of the Utrecht Proactive Coping Competence scale (UPCC)The concept of proactive coping is relevant to health psychology as it indicates that people have the ability to anticipate and deal with potential threats to their health before they occur. Based on the conceptual model developed by Aspinwall en Taylor (1997), the Utrecht Proactive Coping Competence scale (UPCC) was developed to assess an individual’s competency with regard to the various skills associated with proactive coping. This study examines the psychometric characteristics of the scale, including its reliability, construct validity and predictive validity, and responsiveness to change. Results are based on three studies (N=545), including two intervention studies among elderly subjects and patients with diabetes and a crosssectional study among young adults. The scale consists of 21 items which together form one factor. The UPPC proves to be highly reliable and is positively associated with other measures of future-orientation, goal-setting and planning and negatively associated with measures of worry and distress. The UPCC is also positively associated with measures of goal attainment, self-efficacy and health behaviors. The studies show that the UPCC is sensitive to interventions, while improvements in the measure of proactive coping are associated with significantly more improvements in self-care behaviours up to 12 months later. The UPCC is thereby shown to be a practical self-report instrument which is relevant to both theoretical studies on self-regulation and professionals who wish to support clients in achieving and maintaining long-term health goals.

Limited results of group self-management education for rheumatoid arthritis patients and their partners: Explanations from the patient perspective.

This study aimed to identify the reasons for limited results of group self-management for RA patients and their partners from the patient perspective. Semi-structured interviews with ten male and ten female patients who had participated in group self-management with or without their partner were content analyzed with respect to motivation to participate and the effects of the program on them. The limited effects of the self-management program appear to be linked with low motivation to participate and to change health behavior. The data show that a decline in health and also stressful life events might be associated with the disappointing effects of the program. Three strategies were proposed for improving the program’s effects: (a) provide information about the program in advance to ensure that patients have appropriate expectations. (b) Enhance intrinsic motivation to change health behavior by counseling techniques. (c) Tailoring with respect to motivation and current concerns could help to form more homogeneous groups or could be the basis for a tailored online intervention.

The role of goal management for successful adaptation to arthritis

OBJECTIVE Persons with polyarthritis often experience difficulties in attaining personal goals due to disease symptoms such as pain, fatigue and reduced mobility. This study examines the relationship of goal management strategies - goal maintenance, goal adjustment, goal disengagement, goal reengagement - with indicators of adaptation to polyarthritis, namely, depression, anxiety, purpose in life, positive affect, participation, and work participation. METHODS 305 patients diagnosed with polyarthritis participated in a questionnaire study (62% female, 29% employed, mean age: 62 years). Hierarchical multiple-regression-analyses were conducted to examine the relative importance of the goal management strategies for adaptation. Self-efficacy in relation to goal management was also studied. RESULTS For all adaptation indicators, the goal management strategies added substantial explained variance to the models (R(2): .07-.27). Goal maintenance and goal adjustment were significant predictors of adaptation to polyarthritis. Self-efficacy partly mediated the influence of goal management strategies. CONCLUSION Goal management strategies were found to be important predictors of successful adaptation to polyarthritis. Overall, adjusting goals to personal ability and circumstances and striving for goals proved to be the most beneficial strategies. PRACTICE IMPLICATIONS Designing interventions that focus on the effective management of goals may help people to adapt to polyarthritis.

Body-self unity and self-esteem in patients with rheumatic diseases

Perceptions and evaluations of the own body are important sources of self-esteem. Having a rheumatic disease challenges maintenance of positive self-esteem due to consequences of the disease such as unfavorable sensations as pain and limited (physical) functioning. We expect that a positive experience of the own body in spite of a rheumatic disease (body-self harmony) will be associated with higher levels of self-esteem and that experiencing the body as unworthy part of the own person or as disabler for own strivings (body-self alienation) will result in lower levels of self-esteem. For this explorative study, the body experience questionnaire (BEQ) measuring body-self unity was developed and piloted. One hundred sixty-eight patients visiting the outpatient rheumatology clinic of the Medisch Spectrum Twente, Enschede, The Netherlands, completed a questionnaire on touchscreen computers to measure body-self unity (BEQ), illness cognitions (illness cognition questionnaire), pain intensity, functional limitations (health assessment questionnaire disability index), self-esteem (Rosenberg Self-Esteem Scale) and demographics. To analyze predictors of self-esteem, hierarchical regression analyses were employed. The BEQ revealed a two-factor structure with good reliability (subscale harmony, four items, Cronbachs α = 0.76; subscale alienation, six items, Cronbachs α = 0.84). The final model of the hierarchical regression analyses showed that self-esteem can be predicted by the illness cognitions helplessness and acceptance, by harmony and most strongly by alienation from the body. R2 of the final model was 0.50. The relationship between functional limitations and self-esteem was totally mediated by the psychological constructs body-self unity and illness cognitions. This explorative study showed the importance of the unity of body and self for self-esteem in patients with a rheumatic disease.

Identifying key domains of health-related quality of life for patients with Chronic Obstructive Pulmonary Disease: the patient perspective

BackgroundNumerous instruments are available to measure health-related quality of life (HRQoL) in patients with Chronic Obstructive Pulmonary Disease (COPD), covering a wide array of domains ranging from symptoms such as dyspnea, cough and wheezing, to social and emotional functioning. Currently no information or guide is available yet to aid the selection of domains for a particular study or disease population. The aim of this paper is to identify which domains of HRQoL are most important with respect to COPD, from the patient perspective.MethodsTwenty-one Dutch patients with COPD were asked to describe important domains impacted by COPD freely; second, they were presented with cues (domains from the Patient-Reported Outcomes Measurement Information System (PROMIS) framework) and were asked to select the domains that were most relevant to them. During the interview, the patients were asked to indicate in which way the selected domains impact their lives. Both the answers to the open question, and the patient statements motivating nomination of PROMIS domains were coded into themes.ResultsThe most relevant (sub)domains of HRQoL for patients with COPD were: physical health (fatigue, physical functioning), social health (instrumental support, ability to participate in social roles and activities, companionship, and emotional support), and coping with COPD.ConclusionWe identified which domains of HRQoL are most important to patients with COPD. One of these (coping with COPD) is not explicitly covered by PROMIS, or by traditional questionnaires that are used to measure HRQoL in COPD.

Assessment of Fatigue in Rheumatoid Arthritis: A Psychometric Comparison of Single-item, Multiitem, and Multidimensional Measures

Objective. To compare the psychometric functioning of multidimensional disease-specific, multiitem generic, and single-item measures of fatigue in patients with rheumatoid arthritis (RA). Methods. Confirmatory factor analysis (CFA) and longitudinal item response theory (IRT) modeling were used to evaluate the measurement structure and local reliability of the Bristol RA Fatigue Multi-Dimensional Questionnaire (BRAF-MDQ), the Medical Outcomes Study Short Form-36 (SF-36) vitality scale, and the BRAF Numerical Rating Scales (BRAF-NRS) in a sample of 588 patients with RA. Results. A 1-factor CFA model yielded a similar fit to a 5-factor model with subscale-specific dimensions, and the items from the different instruments adequately fit the IRT model, suggesting essential unidimensionality in measurement. The SF-36 vitality scale outperformed the BRAF-MDQ at lower levels of fatigue, but was less precise at moderate to higher levels of fatigue. At these levels of fatigue, the living, cognition, and emotion subscales of the BRAF-MDQ provide additional precision. The BRAF-NRS showed a limited measurement range with its highest precision centered on average levels of fatigue. Conclusion. The different instruments appear to access a common underlying domain of fatigue severity, but differ considerably in their measurement precision along the continuum. The SF-36 vitality scale can be used to measure fatigue severity in samples with relatively mild fatigue. For samples expected to have higher levels of fatigue, the multidimensional BRAF-MDQ appears to be a better choice. The BRAF-NRS are not recommended if precise assessment is required, for instance in longitudinal settings.

A goal management intervention for polyarthritis patients: rationale and design of a randomized controlled trial

BackgroundA health promotion intervention was developed for inflammatory arthritis patients, based on goal management. Elevated levels of depression and anxiety symptoms, which indicate maladjustment, are found in such patients. Other indicators of adaptation to chronic disease are positive affect, purpose in life and social participation. The new intervention focuses on to improving adaptation by increasing psychological and social well-being and decreasing symptoms of affective disorders. Content includes how patients can cope with activities and life goals that are threatened or have become impossible to attain due to arthritis. The four goal management strategies used are: goal maintenance, goal adjustment, goal disengagement and reengagement. Ability to use various goal management strategies, coping versatility and self-efficacy are hypothesized to mediate the intervention’s effect on primary and secondary outcomes. The primary outcome is depressive symptoms. Secondary outcomes are anxiety symptoms, positive affect, purpose in life, social participation, pain, fatigue and physical functioning. A cost-effectiveness analysis and stakeholders’ analysis are planned.Methods/designThe protocol-based psycho-educational program consists of six group-based meetings and homework assignments, led by a trained nurse. Participants are introduced to goal management strategies and learn to use these strategies to cope with threatened personal goals. Four general hospitals participate in a randomized controlled trial with one intervention group and a waiting list control condition.DiscussionThe purpose of this study is to evaluate the effectiveness of a goal management intervention. The study has a holistic focus as both the absence of psychological distress and presence of well-being are assessed. In the intervention, applicable goal management competencies are learned that assist people in their choice of behaviors to sustain and enhance their quality of life.Trial registrationNederlands Trial Register = NTR3606, registration date 11-09-2012.

Experiences of gout-related disability from the patients’ perspective: a mixed methods study

Disability is a common problem in patients with gout. Recently, the Health Assessment Questionnaire Disability Index (HAQ-DI) was recommended for assessing patient-reported activity limitations in gout. However, few studies have explored experiences and issues of disability from the perspective of gout patients themselves. The objectives of this study were to explore disability issues in patients with gout and to examine the content validity of the HAQ-DI in this patient group. Two studies were performed: a semi-structured interview study with seven male gout patients and a cross-sectional survey study among 34 other patients with gout. In both studies, specific examples of activity limitations were elicited using open-ended methods. The survey study additionally aimed to quantify the relevance of the activities listed in the HAQ-DI. Most patients experienced several gout attacks in the previous year. Limitations were reported to occur during a flare, but patients were generally not limited between attacks. During an attack, patients mainly experienced limitations related to mobility, especially walking and climbing stairs. Patients also mentioned limitations in activities related to domestic life, such as gardening and doing housework. Limitations related to self-care or activities requiring the use of the upper extremities were rarely mentioned. Corresponding HAQ-DI items were skewed towards very low disability scores over the past week. Assessments of gout-related disability should particularly focus on mobility and lower extremity functioning and should consider the intermittent nature of the disease. The HAQ-DI may not adequately meet these requirements, suggesting the need to explore other measures of gout-related disability.