Health-related quality of life in sarcoidosis

Purpose of review: The review presents an overview of the scientific publications in the field of health-related quality of life (HRQL) in sarcoidosis. Recent findings: Literature on HRQL in sarcoidosis is limited. HRQL was mainly used as a primary or secondary endpoint in intervention studies. Moreover, most studies have measured HRQL in sarcoidosis by means of the generic questionnaire 36-Item Short-Form Health Survey. Sarcoidosis-specific questionnaires and computer-adapted testing are innovative approaches to the field. Summary: HRQL as a primary or secondary outcome in sarcoidosis studies is still scarce. In addition to the proper definition of the concept, the mode of measurement of HRQL remains a matter of debate. Because health-economical evaluations require data on gained quality of life, future studies on sarcoidosis should include HRQL as the study endpoin

Patient education and disease activity: A study among rheumatoid arthritis patients

Objective: To determine whether patients experiencing high disease activity derive more benefit from patient education than those experiencing low disease activity. - \ud Methods: Data from a randomized study on the effects of a program of patient education were analyzed retrospectively. Four subgroups were studied: the high disease activity subgroup of patients who had participated in the educational program, the complementary low disease activity subgroup, the high disease activity subgroup of controls, and its low disease activity complement. Patients with erythrocyte sedimentation rate >28 mm/first hour were classified as having high disease activity. Effects on frequency of physical exercises, endurance exercises, and relaxation exercises and effects on health status (Modified Health Assessment Questionnaire, Dutch Arthritis Impact Measurement Scales [AIMS]) were measured. - \ud Results: There were no significant differences between the adherence parameters of the various pairs of groups. Four months after the educational program began, anxiety and depression scores on the Dutch-AIMS had increased among participating patients who were experiencing high disease activity and decreased among those who were experiencing low disease activity. - \ud Conclusions: Patients experiencing high disease activity did not derive more benefit from patient education than those experiencing low disease activity. On the contrary, an increase of anxiety and depression is found in these patients. Further study is needed to confirm our findings

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

Background A 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/design The 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. Discussion The 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 lif

Goal management strategies and 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 (R2: .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

Experience of aging in patients with rheumatic disease: A comparison with the general population

Objectives: Self-perceptions of aging have been shown to predict mental and physical health and even longevity. This study examined the aging perceptions of patients with rheumatic disease and compared them with the general Dutch population.\ud \ud Methods: Consecutive patients visiting a rheumatology clinic completed the Personal Experience of Aging Scale (PEAS) subscales: physical decline, social loss, continuous growth, and two sentence stems from the SELE instrument (What I like/do not like about getting older …) as qualitative measures of the subjective experience of aging. A representative sample from the general Dutch population between 40 and 85 years was used as a comparison group. Participants included in this study were 208 patients with a rheumatic disease and 975 persons from the Dutch Aging Survey (DAS).\ud \ud Results: Both quantitative and qualitative data showed that patients perceived aging more strongly as physical decline. These negative experiences did not extend to social and psychological domains of aging. Age-group comparisons revealed that patients in middle adulthood experienced physical aging similar to older people without a rheumatic disease.\ud \ud Conclusion: The negative experience of aging in patients is limited to the physical domain and does not extend to other domains of life. The negative experience of physical aging even in middle-aged groups warrants further studies on its effects on mental and physical health outcomes and health behavior in patients with rheumatic disease

Future expectations and worst-case future scenarios of patients with rheumatoid arthritis: a focus group study

Objective:\ud Over the past 15 years, developments in the treatment of rheumatoid arthritis (RA) have resulted in better clinical outcomes. The aim of the present study was to explore how patients think their RA will influence their lives in the future, and which of these future expectations would be the worst for them to experience.\ud \ud Methods:\ud A focus group study was performed in 16 RA patients. Three groups were heterogeneously composed, based on age group (18–40, 40–65, 65–80), gender and having a paid job or not. Patients were asked about the expected future impact of RA and worst-case future scenarios. Transcripts were coded by three researchers under the main components of the International Classification of Functioning, Disability and Health. The codes were discussed until agreement was reached about all codes.\ud \ud Results:\ud Dependency on others, increasing dependency on medication, inability to walk, activity limitations and worsening fatigue were mentioned as worst-case future scenarios. Further concerns were raised about the acceptance of RA and possible disappearance of physicians' expertise. Nevertheless, hope and positive feelings were expressed toward continuous medication improvements.\ud \ud Conclusion:\ud The present study provided insight into RA patients' future expectations and worst-case future scenarios. The results may be of help in the development of support interventions to put concerns and worst-case future scenarios into a realistic perspective. Furthermore, insight into patients' worst-case future scenarios could be used to improve the validity and responsiveness of the Time Trade-Off, an instrument to measure preference-based health-related quality of life

Comparison of measures of functional disability in patients with gout

Objective. To compare the measurement properties of the HAQ disability index (HAQ-DI), HAQ-II and short form 36 physical functioning scale (PF-10) in patients with gout. Methods. A cross-sectional sample of 97 patients with gout completed all three measures. Reliability was assessed by examining the internal consistency of the scales. Validity was assessed by testing for expected intercorrelations and associations with other aspects of health status and the ability to discriminate between patients with different levels of general health. Additionally, distributional properties were examined. Results. All three measures demonstrated high reliability (Cronbach’s α ≥0.93), strong intercorrelations (r ≥ 0.75), and the expected pattern of external correlations. The HAQ-DI and HAQ-II performed somewhat better in discriminating between patients. However, both demonstrated ceiling effects of 34.0 and 25.8%, respectively, compared with only 7.2% of the patients scoring no disability on the PF-10. Conclusions. The HAQ-DI, HAQ-II and PF-10 demonstrated similar and adequate reliability and validity for measuring functional disability in patients with gout. The large ceiling effects of both HAQ versions, however, may point to limited content validity and responsiveness to change. Further research should examine whether current instruments cover all aspects of physical functioning relevant to patients with gou

Adherence to a Treat-to-Target Strategy in Early Rheumatoid Arthritis: Results of the DREAM Remission Induction Cohort

Introduction\ud Clinical trials have demonstrated that treatment-to-target (T2T) is effective in achieving remission in early rheumatoid arthritis (RA). However, the concept of T2T has not been fully implemented yet and the question is whether a T2T strategy is feasible in daily clinical practice. The objective of the study was to evaluate the adherence to a T2T strategy aiming at remission (Disease Activity Score in 28 joints (DAS28) < 2.6) in early RA in daily practice. The recommendations regarding T2T included regular assessment of the DAS28 and advice regarding DAS28-driven treatment adjustments. \ud \ud Methods\ud A medical chart review was performed among a random sample of 100 RA patients of the DREAM remission induction cohort. At all scheduled visits, it was determined whether the clinical decisions were compliant to the T2T recommendations. \ud \ud Results\ud The 100 patients contributed to a total of 1,115 visits. The DAS28 was available in 97.9% (1,092/1,115) of the visits, of which the DAS28 was assessed at a frequency of at least every three months in 88.3% (964/1,092). Adherence to the treatment advice was observed in 69.3% (757/1,092) of the visits. In case of non-adherence when remission was present (19.5%, 108/553), most frequently medication was tapered off or discontinued when it should have been continued (7.2%, 40/553) or treatment was continued when it should have been tapered off or discontinued (6.2%, 34/553). In case of non-adherence when remission was absent (42.1%, 227/539), most frequently medication was not intensified when an intensification step should have been taken (34.9%, 188/539). The main reason for non-adherence was discordance between disease activity status according to the rheumatologist and DAS28. \ud \ud Conclusions\ud The recommendations regarding T2T were successfully implemented and high adherence was observed. This demonstrates that a T2T strategy is feasible in RA in daily clinical practic

Items and dimensions for the construction of a multidimensional computerized adaptive test to measure fatigue in patients with rheumatoid arthritis

Objectives Development of an item pool to construct a future computerized adaptive test (CAT) for fatigue in rheumatoid arthritis (RA). The item pool was based on the patients' perspective and examined for face and content validity previously. This study assessed the fit of the items with seven predefined dimensions and examined the item pool's dimensionality structure in statistical terms. Study Design and Setting A total of 551 patients with RA participated in this study. Several steps were conducted to come from an explorative item pool to a psychometrically sound item bank. The item response theory (IRT) analysis using the generalized partial credit model was conducted for each of the seven predefined dimensions. Poorly fitting items were removed. Finally, the best possible multidimensional IRT (MIRT) model for the data was identified. Results In IRT analysis, 49 items showed insufficient item characteristics. Items with a discriminative ability below 0.60 and/or model misfit effect sizes greater than 0.10 were removed. Factor analysis on the 196 remaining items revealed three dimensions, namely severity, impact, and variability of fatigue. The dimensions were further confirmed in MIRT model analysis. Conclusion This study provided an initially calibrated item bank and showed which dimensions and items can be used for the development of a multidimensional CAT for fatigue in R