Patients' perspectives on quality of life after burn.

BACKGROUND: The concept quality of life (QOL) refers to both health-related outcomes and one's 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 patient's 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 patient's 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.

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 D's components and their associations with health in an additive (worse health with both components present) or synergistic way (components amplifying each other's 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 D's components may have specific treatment implications.

The prevalence of severe fatigue in rheumatic diseases: an international study.

Fatigue is a common, disabling, and difficult-to-manage problem in rheumatic diseases. Prevalence estimates of fatigue within rheumatic diseases vary considerably. Data on the prevalence of severe fatigue across multiple rheumatic diseases using a similar instrument is missing. Our aim was to provide an overview of the prevalence of severe fatigue across a broad range of rheumatic diseases and to examine its association with clinical and demographic variables. Online questionnaires were filled out by an international sample of 6120 patients (88 % female, mean age 47) encompassing 30 different rheumatic diseases. Fatigue was measured with the RAND(SF)-36 Vitality scale. A score of ≤35 was taken as representing severe fatigue (90 % sensitivity and 81 % specificity for chronic fatigue syndrome). Severe fatigue was present in 41 to 57 % of patients with a single inflammatory rheumatic disease such as rheumatoid arthritis, systemic lupus erythematosus, ankylosing spondylitis, Sjögren's syndrome, psoriatic arthritis, and scleroderma. Severe fatigue was least prevalent in patients with osteoarthritis (35 %) and most prevalent in patients with fibromyalgia (82 %). In logistic regression analysis, severe fatigue was associated with having fibromyalgia, having multiple rheumatic diseases without fibromyalgia, younger age, lower education, and language (French: highest prevalence; Dutch: lowest prevalence). In conclusion, one out of every two patients with a rheumatic disease is severely fatigued. As severe fatigue is detrimental to the patient, the near environment, and society at large, unraveling the underlying mechanisms of fatigue and developing optimal treatment should be top priorities in rheumatologic research and practice.

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.

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 one's 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).

Loneliness in patients with rheumatic diseases: the significance of invalidation and lack of social support.

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*1; 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.

A combination of illness invalidation from the work environment and helplessness is associated with embitterment in patients with FM.

OBJECTIVES: The aim of this study in employed people with FM was to test the hypothesis that embitterment is a function of the joint experience of invalidation from the work environment and helplessness regarding one's illness. METHODS: Sixty-four full-time (36%) or part-time (64%) employed patients with FM (60 females, mean age 45 years) completed the Illness Invalidation Inventory (3*I) to assess work-related discounting and lack of understanding, the Illness Cognition Questionnaire (ICQ) to assess helplessness and the Bern Embitterment Inventory (BEI) to assess embitterment. Hierarchical regression analysis was performed. RESULTS: Sixteen percent of the participants experienced embitterment levels in the clinical range. The interaction or combination of discounting and helplessness (P = 0.02) and the combination of lack of understanding and helplessness (P = 0.04) were associated with greater embitterment. CONCLUSIONS: The construct of embitterment has substantial face validity and may result from a combination of invalidation and helplessness. Whereas helplessness is a common target of cognitive-behavioural therapy, evidence-based interventions to redress invalidation and embitterment are needed. It is possible, however, to target invalidation by educating people in the work environment about the consequences of FM and patients' valid needs for work that is manageable, given each patient's specific health-related limitations.

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.

Understanding the lack of understanding: invalidation from the perspective of the patient with fibromyalgia.

OBJECTIVE: Patients with fibromyalgia have difficulty with the invisibility and medically unexplained character of the syndrome. Disbelief, lack of acceptance, and stigmatization by their spouse, family, colleagues, the health care system, and society are key issues in their lives. Nevertheless, the components of this phenomenon that we term "invalidation" are not clear. The aim of our study was to identify the definition and structure of invalidation as perceived by patients with fibromyalgia. METHODS: A hierarchical cluster analysis was applied to examine everyday invalidation experiences of patients with fibromyalgia. Ninety-four statements about invalidation that were derived from interviews and a card-sorting (Q-sort) technique provided the input for this cluster analysis. RESULTS: The hierarchical structure of invalidation showed a higher-order distinction between statements reflecting "discounting" and "understanding." Discounting was subdivided into the components "denying" and "patronizing" (consisting of "lecturing" and "overprotecting"). Understanding was subdivided into "supporting" and "acknowledging." These higher-order constructs were further subdivided into 15 lower-order clusters that reflected cognitive, affective, and behavioral aspects of invalidation. CONCLUSION: Invalidation as perceived by patients with fibromyalgia includes active negative social responses (denying, lecturing, and overprotecting) as well as a lack of positive social responses (supporting and acknowledging) with respect to the patient and the condition of the patient. This definition of invalidation provides a basis to quantify invalidation and to study its impact on symptom severity, quality of life, therapy adherence, therapy outcome, and other important aspects of 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.