Marianne B. Kool

Loneliness in Patients with Rheumatic Diseases: The Significance of Invalidation and Lack of Social Support

ABSTRACT Rheumatic diseases affect about 20% of the population, leading to common symptoms such as joint problems, pain, fatigue, and stiffness. Loneliness is prevalent in individuals with rheumatic diseases. This could be due to not receiving social support and being stigmatized and invalidated, which might be most common in fibromyalgia, a rheumatic disease that lacks medical evidence. The aim of this study was to compare loneliness in distinct rheumatic diseases and to examine the association of loneliness with social support and invalidation. Participants were 927 patients with ankylosing spondylitis (n = 152), fibromyalgia (n = 341), osteoarthritis (n = 150), rheumatoid arthritis (n = 171), or systemic diseases (n = 113). They completed online questionnaires including an 11-point Likert scale assessing loneliness, the Illness Invalidation Inventory (3*I; Kool et al., 2010), and the Social Support Survey (SSS; De Boer, Wijker, Speelman, & De Haes, 1996; Sherbourne & Stewart, 1991). Patients with fibromyalgia experienced significantly more loneliness than patients with ankylosing spondylitis and patients with rheumatoid arthritis. Besides being younger, having lower education, and not working, in multiple regression analyses both lack of social support and invalidation were independently correlated with loneliness. This suggests that to decrease loneliness, therapeutic attention should be given to both increasing social support as well as decreasing invalidation in patients with rheumatic diseases, especially in patients with fibromyalgia.

Low Relationship Satisfaction and High Partner Involvement Predict Sexual Problems of Women with Fibromyalgia

To examine the predictive potential of relationship variables on sexual functioning in women with fibromyalgia, we instructed 63 women (age 21–54 years) to fill out several questionnaires. Low relationship satisfaction was the strongest and most-frequent predictor of problematic sexual functioning. In addition, more fatigue and—only after taking account of relationship satisfaction—more active engagement (i.e., involvement) of the spouse were associated with reduced sexual functioning and satisfaction. Our study suggests that for women with fibromyalgia, relationship satisfaction is good for sexual functioning. Although having an involved spouse is good for the relationship, it may be bad for sexual functioning.

Social support and invalidation by others contribute uniquely to the understanding of physical and mental health of patients with rheumatic diseases

This study examined whether social support and invalidation (lack of understanding and discounting by others) are differently associated with physical and mental health. Participants were 1455 patients with fibromyalgia, rheumatoid arthritis, ankylosing spondylitis, osteorarthritis, or another rheumatic disease. Participants completed online questionnaires. Social support correlated negatively with discounting responses of others (moderately) and lack of understanding (strongly). Both invalidation and social support were additively associated with patients’ mental health, but only discounting was significantly associated with patients’ physical health. This suggests that improving health of patients with rheumatic diseases requires the consideration of both social support and invalidation.

Characteristics of suitable work from the perspective of patients with fibromyalgia

OBJECTIVES The evaluation of work ability of patients with FM is difficult. Our aim was to investigate the characteristics of suitable work from the perspective of patients with FM. METHODS Interviews with patients yielded statements about characteristics of suitable work. Patients individually sorted these statements according to similarity. Hierarchical cluster analysis was applied to these sortings. RESULTS The hierarchical structure included 74 characteristics of suitable work. The 10 clusters at the lowest level included (i) recovery opportunities, (ii) pace of work, (iii) not too high workload, (iv) keeping energy for home and free time, (v) match between work and capabilities, (vi) development opportunities, (vii) understanding from colleagues, (viii) help from colleagues, (ix) support from management and (x) work agreements with management. CONCLUSIONS According to patients with FM, suitable work is paced in such a way that one can perform the job well and with satisfaction while keeping energy for home and free time and having acknowledgement and help from management and colleagues. The brief suitable work checklist that is provided can help patients with FM to negotiate with employers and job professionals to improve the match between job demands and capabilities.

Measurement invariance of the Illness Invalidation Inventory (3*I) across language, rheumatic disease and gender

Objectives The Illness Invalidation Inventory (3*I) assesses patients’ perception of responses of others that are perceived as denying, lecturing, not supporting and not acknowledging the condition of the patient. It includes two factors: ‘discounting’ and ‘lack of understanding’. In order to use the 3*I to compare and pool scores across groups and countries, the questionnaire must have measurement invariance; that is, it should measure identical concepts with the same factor structure across groups. The aim of this study was to examine measurement invariance of the 3*I across rheumatic diseases, gender and languages. Methods Participants with rheumatic disease from various countries completed an online study using the 3*I, which was presented in Dutch, English, French, German, Portuguese and Spanish; 6057 people with rheumatic diseases participated. Single and multiple group confirmatory factor analyses were used to test the factorial structure and measurement invariance of the 3*I with Mplus. Results The model with strong measurement invariance, that is, equal factor loadings and thresholds (distribution cut-points) across gender and rheumatic disease (fibromyalgia vs other rheumatic diseases) had the best fit estimates for the Dutch version, and good fit estimates across the six language versions. Conclusions The 3*I showed measurement invariance across gender, rheumatic disease and language. Therefore, it is appropriate to compare and pool scores of the 3*I across groups. Future research may use the questionnaire to examine antecedents and consequences of invalidation as well as the effect of treatments targeting invalidation.

Invalidation in patients with rheumatic diseases: Clinical and psychological framework

Objective. The term “invalidation” refers to the patients’ perception that their medical condition is not recognized by the social environment. Invalidation can be a major issue in patients’ lives, adding a significant burden to symptoms and limitations while increasing the risk of physical and psychological disability. In this study in patients with rheumatic diseases, we investigated the relationship between invalidation and sociodemographic, clinical, psychological, and personality characteristics. Methods. This international cross-sectional study included 562 adults with rheumatoid arthritis (n = 124), spondyloarthritis (n = 85), systemic lupus erythematosus (n = 112), or fibromyalgia (FM; n = 241). Assessed were the family and health professionals subscales of the Illness Invalidation Inventory (3*I), happiness (Subjective Happiness Scale), personality (Ten-Item Personality Inventory), pain, and loneliness (numerical rating scales). Univariate and multivariate analyses were used to test different models. Results. Invalidation occurred in all rheumatic diseases, but patients with FM reported the most invalidation. Including all correlated variables in the multivariate model, pain remained as a determinant of invalidation by health professionals, but not by family. Regarding psychological variables, loneliness remained as a determinant of invalidation by family, but not by health professionals. FM and low levels of happiness, agreeableness, and conscientiousness were associated with invalidation while taking account of other variables. Conclusion. Invalidation occurs in all rheumatic diseases and patients with FM experience the most invalidation. Psychological factors (happiness, agreeableness, and conscientiousness), loneliness, and pain intensity are associated with invalidation, irrespective of the rheumatic disease and may deserve dedicated interventions.

Prevalence and relevance of Type D personality in fibromyalgia

OBJECTIVE Distressed (Type D) personality, combining high negative affectivity and social inhibition, is linked to poor health in various populations. Because patients with fibromyalgia experience high negative affect and show signs of social inhibition, this study aimed to examine the prevalence of Type Ds components and their associations with health in an additive (worse health with both components present) or synergistic way (components amplifying each others effects). METHOD Type D personality and physical and mental health were assessed online by 558 patients with self-reported fibromyalgia (94% women, age 47 ± 11 (21-77)years) by the Type D Scale-14 and RAND-36 Health Status Inventory. RESULTS Using the standard cutscores, Type D personality was present in 56.5% of patients. Negative affectivity alone and combined with social inhibition was associated with worse mental and, more limited, physical health, but no interactive (synergistic) associations were found. CONCLUSIONS Type D personality in fibromyalgia exceeds prevalence estimates in general, cardiovascular and chronic pain populations. Some indication of an additive but not of a synergistic effect was found, particularly for mental health, with clearly the largest associations for negative affectivity. The high prevalence of Type Ds components may have specific treatment implications.

Definition and Structure of Body-Relatedness from the Perspective of Patients with Severe Somatoform Disorder and Their Therapists

Background How a patient is connected with ones body is core to rehabilitation of somatoform disorder but a common model to describe body-relatedness is missing. The aim of our study was to investigate the components and hierarchical structure of body-relatedness as perceived by patients with severe somatoform disorder and their therapists. Methods Interviews with patients and therapists yielded statements about components of body-relatedness. Patients and therapists individually sorted these statements according to similarity. Hierarchical cluster analysis was applied to these sortings. Analysis of variance was used to compare the perceived importance of the statements between patients and therapists. Results The hierarchical structure included 71 characteristics of body-relatedness. It consisted of three levels with eight clusters at the lowest level: 1) understanding, 2) acceptance, 3) adjustment, 4) respect for the body, 5) regulation, 6) confidence, 7) self-esteem, and 8) autonomy. The cluster ‘understanding’ was considered most important by patients and therapists. Patients valued ‘regulating the body’ more than therapists. Conclusion According to patients with somatoform disorders and their therapists, body-relatedness includes awareness of the body and self by understanding, accepting and adjusting to bodily signals, by respecting and regulating the body, by confiding and esteeming oneself and by being autonomous. This definition and structure of body-relatedness may help professionals to improve interdisciplinary communication, assessment, and treatment, and it may help patients to better understand their symptoms and treatment. (German language abstract, Abstract S1; Spanish language abstract, Abstract S2).

Patients’ perspectives on quality of life after burn

BACKGROUND The concept quality of life (QOL) refers to both health-related outcomes and ones skills to reach these outcomes, which is not yet incorporated in the burn-related QOL conceptualisation. The aim of this study was to obtain a comprehensive overview of relevant burn-specific domains of QOL from the patients perspective and to determine its hierarchical structure. METHODS Concept mapping was used comprising a focus group (n=6), interviews (n=25), and a card-sorting task (n=24) in burn survivors. Participants sorted aspects of QOL based on content similarity after which hierarchical cluster analysis was used to determine the hierarchical structure of burn-related QOL. RESULTS Ninety-nine aspects of burn-related QOL were selected from the interviews, written on cards, and sorted. The hierarchical structure of burn-related QOL showed a core distinction between resilience and vulnerability. Resilience comprised the domains positive coping and social sharing. Vulnerability included 5 domains subdivided in 13 subdomains: the psychological domain included trauma-related symptoms, cognitive symptoms, negative emotions, body perception and depressive mood; the economical domain comprised finance and work; the social domain included stigmatisation/invalidation; the physical domain comprised somatic symptoms, scars, and functional limitations; and the intimate/sexual domain comprised the relationship with partner, and anxiety/avoidance in sexual life. CONCLUSION From the patients perspective, QOL following burns includes a variety of vulnerability and resilience factors, which forms a fresh basis for the development of a screening instrument. Whereas some factors are well known, this study also revealed overlooked problem and resilience areas that could be considered in client-centred clinical practice in order to customize self-management support.

THU0585 Over Half of Patients with Fibromyalgia have a Type D Personality

Background Type D personality combines 2 stable traits: negative affectivity and social inhibition. It has been linked to poor health status and disease course and outcome in cardiovascular and other chronic conditions [1]. Patients with fibromyalgia experience high negative affect associated with symptoms such as pain and fatigue [2] and may be socially inhibited, e.g., due to earlier victimization or lack of understanding for their medically unexplained symptoms [3]. Therefore, we hypothesized that Type D personality would be prevalent in fibromyalgia and potentially relevant for functioning. Objectives The aim of the current study was to examine the prevalence and correlates of Type D personality in fibromyalgia. Methods As part of an online cross-sectional questionnaire study, 559 English-speaking patients with fibromyalgia (94% women, 21 to 77 (M=47, SD=11) years), filled out measures of Type D personality (DS14), illness invalidation from the social environment (3*I), physical and mental health (RAND SF-36), and pain, loneliness, and quality of life (visual analogue scales). Results The internal consistency of the Type D questionnaire was high (α>.90). Using the standard cut-score, Type D personality was present in 56% of patients, which exceeds the prevalence estimates in the general (13-24%), cardiovascular (27-31%), and diverse chronic pain (43%) populations [1,4]. Compared to the general population, negative affectivity was high (Cohen’s d=1.28) and social inhibition was above average (Cohen’s d=0.35). Having Type D personality was associated with worse mental health (d=1.02), more loneliness (d=0.72), more role limitations due to emotional functioning (d=0.54), lower quality of life (d=0.52), less vitality (d=0.36), poorer social functioning (d=0.27), and a higher perceived lack of understanding (d=0.23) and more discounting (d=0.20) from the social environment. Regarding physical health, only associations between type D personality and a worse general health were found (d=0.48). Conclusions Type D personality is highly prevalent in fibromyalgia and a potential risk factor for emotional and social adjustment in fibromyalgia. In contrast to the evidence in cardiovascular diseases, Type D is not associated with poorer physical health. References Mols F, Denollet J. Type D personality among noncardiovascular patient populations: A systematic review. Gen Hosp Psychiatry 2010;32:66-72. Van Middendorp H, Lumley MA, Jacobs JW, et al. Emotions and emotional approach and avoidance strategies in fibromyalgia. J Psychosom Res 2008;64:159-67. Kool MB, Van Middendorp H, Lumley MA et al. Lack of understanding in fibromyalgia and rheumatoid arthritis: The Illness Invalidation Inventory (3*I). Ann Rheum Dis 2010;69:1990-5. Barnett MD, Ledoux T, Garcini LM et al. Type D personality and chronic pain: Construct and concurrent validity of the DS14. J Clin Psychol Med Settings 2009;16:194-9. Acknowledgements This study was funded by the Dutch Arthritis Association. Disclosure of Interest None Declared