Coping strategies and depressiveness in primary systemic vasculitis--what is their impact on health-related quality of life?

OBJECTIVE: To investigate the influence of disease-related coping strategies and depressiveness on health-related quality of life (HRQOL) in primary systemic vasculitis (PSV) patients. METHODS: One hundred and twenty-two patients with definite diagnosis of PSV were examined in a cross-sectional study. HRQOL (SF-36), depressiveness (BDI), illness perception (B-IPQ) and coping strategies (FKV-LIS) were measured using validated instruments. Additional disease-related and demographic data were retrieved from the patients' records. RESULTS: HRQOL in PSV patients was reduced compared with the SF-36 norm sample. Specific organ manifestation, size of vessel involvement and disease activity were not related to HRQOL. Linear regression modelling revealed a questionable relationship of emotional to physical HRQOL (P = 0.003, potential suppression effect of BDI), whereas both domains were influenced by depressiveness (P ≤ 0.001). Physical HRQOL was additionally related to fatigue and widowed marital status, while emotional HRQOL was associated with a depressive coping style. CONCLUSION: HRQOL is impaired in PSV as compared with the general population. Current depressiveness strongly affects physical as well as mental HRQOL. Cognitive intervention strategies should be established in order to improve quality of life in PSV patients.

[The significance of health-related quality of life in systemic vasculitides]. / Bedeutung der gesundheitsbezogenen Lebensqualität bei systemischen Vaskulitiden.

Systemic vasculitides are a heterogenous group of chronic relapsing diseases. Initial data show that health-related quality of life (HRQoL) from the patient's perspective is reduced on all levels (physical, social and emotional). These studies suggest that generic questionnaires do not encompass all relevant and important levels of HRQoL in vasculitis. Moreover, data indicate that tiredness (fatigue) and reduced energy levels play a significant role. This article presents an overview of the existing literature.

Feasibility and Construct Validation of the Patient Reported Outcomes Measurement Information System in Systemic Vasculitis.

OBJECTIVE: The Patient Reported Outcome Measurement Information System (PROMIS) is a collection of item banks of self-reported health. This study assessed the feasibility and construct validity of using PROMIS instruments in vasculitis. METHODS: Data from a multicenter longitudinal cohort of subjects with systemic vasculitis were used. Instruments from 10 PROMIS item banks were selected with direct involvement of patients. Subjects completed PROMIS instruments using computer adaptive testing (CAT). The Medical Outcomes Study Short Form-36 (SF-36) was also administered. Cross-sectional construct validity was assessed by calculating correlations of PROMIS scores with SF-36 measures and physician and patient global scores for disease activity. Longitudinal construct validity was assessed by correlations of between-visit differences in PROMIS scores with differences in other measures. RESULTS: During the study period, 973 subjects came for 2306 study visits and the PROMIS collection was completed at 2276 (99%) of visits. The median time needed to complete each PROMIS instrument ranged from 40 to 55 s. PROMIS instruments correlated cross-sectionally with individual scales of the SF-36, most strongly with subscales of the SF-36 addressing the same domain as the PROMIS instrument. For example, PROMIS fatigue correlated with both the physical component score (PCS; r = -0.65) and with the mental component score (MCS; r = -0.54). PROMIS physical function correlated strongly with PCS (r = 0.81) but weakly with MCS (r = 0.29). Weaker correlations were observed longitudinally between change in PROMIS scores with change in PCS and MCS. CONCLUSION: Collection of data using CAT PROMIS instruments is feasible among patients with vasculitis and has some cross-sectional and longitudinal construct validity.

The Relationship Between Social Support, Social Constraint, and Psychological Adjustment for Patients with Rare Autoimmune Disease.

Our goals were to describe the balance of social support to negative social interactions (i.e. social constraint) for autoimmune disease patients and determine whether support and constraint from spouses and non-spousal family and friends interact to influence patients' psychological adjustment. Using crosssectional survey data from 109 married vasculitis and lupus patients, we found that patients reported that spouses and family/friends provided more social support than social constraint. In regression models, constraint from spouses (ß= -0.45, p<0.01) and family/friends (ß= -0.89, p<0.001) were associated with worse patient psychological adjustment. A significant 3-way interaction revealed that patients with low spousal support had worse psychological adjustment as the levels of family and friend support increased. In contrast, patients with high levels of spousal support reported better psychological adjustment as family and friend support increased. Future longitudinal studies may help to elucidate the complex interplay between constraint and support from spouses, family, and friends.

Causal attributions about disease onset and relapse in patients with systemic vasculitis.

OBJECTIVE: Patients vary in their beliefs related to the cause of serious illness. The effect of these beliefs among patients with systemic vasculitis is not known. Our study aimed to describe causal attributions about disease onset and relapse in systemic vasculitis and to examine whether causal beliefs differ by type of vasculitis or are associated with negative health outcomes. METHODS: Patients with vasculitis were recruited to complete an online questionnaire. Categories of causal beliefs were assessed with the Revised Illness Perception Questionnaire (IPQ-R). Differences in beliefs about disease onset versus relapse were compared across different forms of vasculitis. Causal beliefs were assessed in association with several health outcomes including fatigue, functional impairments, and personal understanding of the condition. RESULTS: The questionnaire was completed by 692 patients representing 9 forms of vasculitis. The majority (90%) of patients had beliefs about the cause of their illness. Causal attributions were highly variable, but altered immunity and stress were the most commonly agreed-upon causal beliefs. Frequencies of causal beliefs were strikingly similar across different forms of vasculitis, with a few notable exceptions primarily in Behçet disease. Beliefs differed about causes of disease onset versus relapse. Specific beliefs about disease onset and relapse were weakly associated with fatigue, functional impairments, and understanding of the condition. CONCLUSION: Patient beliefs related to the cause of systemic vasculitis are highly variable. Patterns of causal beliefs are associated with important negative health outcomes. Clinicians who care for patients with vasculitis should be mindful of these associations and consider asking about patients' causal beliefs.

Illness perceptions and fatigue in systemic vasculitis.

OBJECTIVE: To compare illness perceptions among patients with different forms of vasculitis, identify risk factors for negative illness perceptions, and determine the association between illness perceptions and fatigue. METHODS: Participants were recruited from an online vasculitis registry to complete the revised Illness Perception Questionnaire (IPQ-R). The mean scores on each IPQ-R dimension were compared across different types of vasculitis. Cluster analysis and stepwise regression identified predictors of negative illness perception. Fatigue was measured using the general subscale of the Multidimensional Fatigue Inventory (MFI-20). Patient-reported measures of disease activity and IPQ-R dimensions were assessed in relation to MFI-20 scores using linear regression in sequential, additive models with model-fit comparisons. RESULTS: In total, 692 participants with 9 types of vasculitis completed the IPQ-R. For 6 of the 8 IPQ-R dimensions, there were no significant differences in mean scores between the different vasculitides. Scores in the identity and cyclical dimensions were significantly higher in Behçet's disease compared with other types of vasculitis (13.5 versus 10.7 for identity and 4.0 versus 3.2 for cyclical [P < 0.05]). Younger age (odds ratio [OR] 1.04, 95% confidence interval [95% CI]1.02­1.06), depression (OR 4.94, 95% CI 2.90­8.41), active disease status (OR 2.05, 95% CI 1.27­3.29), and poor overall health (OR 3.92, 95% CI 0.88­17.56) were associated with negative illness perceptions. The sequential models demonstrated that the IPQ-R dimensions explained an equivalent proportion of variability in fatigue scores compared with measures of disease activity. CONCLUSION: Illness perceptions are similar across different types of vasculitis, and younger age is a risk factor for negative illness perceptions. Illness perceptions explain differences in fatigue scores beyond what can be explained by measures of disease activity.