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Background: Illness perceptions have been found to change over time and following health care. Hence, addressing illness perceptions alongside existing health care interventions may be important for the sustainment of health gains following rehabilitation. The aim of this study was to measure the illness perceptions of patients receiving inpatient rheumatology rehabilitation and assess the association with aspects of health and outcomes at baseline, discharge and 12 months., Methods: Patients with a rehabilitation stay of one week or more at three institutions in Norway in 2009 were invited to participate in the study. At baseline, discharge and 12 months, patients completed The Rheumatic Disease Illness Perception Questionnaire (RD-IPQ) which includes aspects of illness perceptions important to patients with rheumatic diseases. Stepwise regression analysis was used to assess associations between RD-IPQ scores and different aspects of health at baseline and follow-up after controlling for other aspects of health and sociodemographic variables., Results: For the 134 patients included in the study, baseline RD-IPQ scores had a mean of 58.2 (SD 14.9) on a 0-100 scale, where 100 is the worst possible. Scores showed improvement after the rehabilitation stay which were maintained at 12 months. RD-IPQ scores were positively associated with health and outcomes. At baseline RD-IPQ scores were statistically significant in explaining variation in pain, physical function and SF-36 mental health scores. Baseline RD-IPQ scores were significant in explaining fatigue, pain, SF-36 role limitations and social function scores following rehabilitation and at 12 months., Conclusion: Illness perceptions as measured by the RD-IPQ were associated with health and outcomes as measured by rheumatology-specific and generic instruments. The consideration of illness perceptions as a component of rehabilitation may be important in achieving desired outcomes.

Background: Patients are incidentally involved in scientific conferences as collaborating partners. Little is known about how they engage with researchers., Objective: The purpose of this study was to explore the expectations and experiences of new patients to better understand the specific features of collaborative research during conferences in its complexity., Study Design: After a thematic literature review, we conducted fourteen interviews with eight delegates: four men and four women with three rheumatic diseases and representing five countries. They participated for the first time in the biannual conference on Outcome Measures in Rheumatology (OMERACT) in 2010. Data were subjected to a thematic content analysis., Results: Before the conference, patient participants had felt privileged to be invited but felt insufficiently prepared and uncertain about what was expected from their participation. They had anticipated a learning experience and had hoped to be able to make a contribution. Most experienced the conference program as physically and mentally challenging, partially due to poor moderation or lack of individual support. They doubted their input had been beneficial. After the conference these patients also described their participation as having been a valuable, meaningful, and learning experience. Although they presumed that they had not been very productive, they expected their contribution would be more effective at future conferences., Conclusions: Patient delegates attending a scientific conference need clear information about their role prior to the event. Personalized support and a facilitative moderation style during sessions are advantageous for maximizing valuable contributions. Participation leads to personal learning curves and various benefits.

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.

Background: Efforts to facilitate transition of care to adult providers for adolescents with chronic disease are not uniformly successful and many patients encounter challenges. The goal of this study was to assess transition readiness and preferences for tools to aid in the transition process with an emphasis on technology and social media., Methods: We surveyed and performed focus groups on patients aged 13-21 years from a pediatric university-based rheumatology and general pediatric practice. Demographics and transition readiness were assessed using a questionnaire. Transition readiness was assessed by examining patient knowledge and independence with care. Focus groups were conducted to elicit perspectives about desirable features of a transition program and useful tools., Results: Thirty-five patients completed surveys; and 20 patients and 13 of their parents participated in a focus group. The median patient age was 17 years and 74.3% were female. A Likert scale (0-10, 10=most) was used to evaluate concern over changing to an adult medical provider, (mean=6.4, SD=2.6), preparedness for disease self-management (mean=6.0, SD=2.8), and perceived importance of self-managing their condition (mean=7.1, SD=3.1). Themes that emerged from focus groups included a desire for support groups with other teens, a preference for using text messaging for communication and a desire for an online health management program., Conclusions: Teens with chronic disease are able to identify health maintenance tasks and strategies that will aid in developing independence with healthcare management. These findings support the idea that developing engaging applications and support groups will assist teens in the transitioning.

Background: Most Canadians receive basic health services from a family physician and these physicians are particularly critical in the management of chronic disease. Canada, however, has an endemic shortage of family physicians. Physician shortages and turnover are particularly acute in rural regions, leaving their residents at risk of needing to transition between family physicians. The knowledge base about how patients manage transitioning in a climate of scarcity remains nascent. The purpose of this study is to explore the experience of transitioning for chronically ill, rurally situated Canadian women to provide insight into if and how the system supports transitioning patients and to identify opportunities for enhancing that support., Methods: Chronically ill women managing rheumatic diseases residing in two rural counties in the province of Ontario were recruited to participate in face-to-face, semi-structured interviews. Interview transcripts were analysed thematically to identify emergent themes associated with the transitioning experience., Results: Seventeen women participated in this study. Ten had experienced transitioning and four with long-standing family physicians anticipated doing so soon. The remaining three expressed concerns about transitioning. Thematic analysis revealed the presence of a transitioning trajectory with three phases. The detachment phase focused on activities related to the termination of a physician-patient relationship, including haphazard notification tactics and the absence of referrals to replacement physicians. For those unable to immediately find a new doctor, there was a phase of unattachment during which patients had to improvise ways to receive care from alternative providers or walk-in clinics. The final phase, attachment, was characterized by acceptance into the practice of a new family physician., Conclusions: Participants often found transitioning challenging, largely due to perceived gaps in support from the health care system. Barriers to a smooth transition included inadequate notification procedures, lack of formal assistance finding new physicians, and unsatisfactory experiences seeking care during unattachment. The participants' accounts reveal opportunities for a stronger system presence during transition and a need for further research into alternative models of primary care delivery.

Objective: To estimate the minimum clinically important improvement (MCII) and patient acceptable symptom state (PASS) values for 4 generic outcomes in 5 rheumatic diseases and 7 countries., Methods: We conducted a multinational (Australia, France, Italy, Lebanon, Morocco, Spain, and The Netherlands) 4-week cohort study involving 1,532 patients who were prescribed nonsteroidal antiinflammatory drugs for ankylosing spondylitis, chronic back pain, hand osteoarthritis, hip and/or knee osteoarthritis, or rheumatoid arthritis. The MCII and PASS values were estimated with the 75th percentile approach for 4 generic outcomes: pain, patient global assessment, functional disability, and physician global assessment, all normalized to a 0-100 score., Results: For the whole sample, the estimated MCII values for absolute change at 4 weeks were -17 (95% confidence interval [95% CI] -18, -15) for pain; -15 (95% CI -16, -14) for patient global assessment; -12 (95% CI -13, -11) for functional disability assessment; and -14 (95% CI -15, -14) for physician global assessment. For the whole sample, the estimated PASS values were 42 (95% CI 40, 44) for pain; 43 (95% CI 41, 45) for patient global assessment; 43 (95% CI 41, 44) for functional disability assessment; and 39 (95% CI 37, 40) for physician global assessment. Estimates were consistent across diseases and countries (for subgroups ≥20 patients)., Conclusion: This work allows for promoting the use of values of MCII (15 of 100 for absolute improvement, 20% for relative improvement) and PASS (40 of 100) in reporting the results of trials of any of the 5 involved rheumatic diseases with pain, patient global assessment, physical function, or physician global assessment used as outcome criteria., (Copyright © 2012 by the American College of Rheumatology.)

Objectives: In this study we evaluated the frequency of autoimmune rheumatic disease associated major symptoms in fibromyalgia (FM) patients, and the association between their presence and anxiety, depression and somatisation., Methods: Two hundred and thirty-two FM, 78 systemic lupus erythematosus (SLE) patients and 70 healthy controls were included. All subjects were questioned face-to-face for the presence of autoimmune rheumatic disease-associated symptoms and antinuclear antibody (ANA) was determined. All FM patients were questioned for the severity of pain and symptoms of FM by using a visual analogue scale. In addition, all subjects were interrogated for anxiety, depression, somatic symptoms and neuropathic pain by using different validated questionnaires., Results: FM patients had significantly higher frequency of photosensitivity (27.6% vs. 11.4%) and Raynaud phenomenon (22% vs. 10%) when compared to controls (p-values, 0.005 and 0.026). FM patients had significantly lower frequencies of photosensitivity, oral ulcers, xerostomia, and xerophthalmia than SLE patients (all p-values <0.001). ANA positivity was 11.8% in FM patients and 7.1% in healthy controls. ANA-positive and negative FM patients had similar frequencies of autoimmune rheumatic disease symptoms. FM patients with photosensitivity had higher anxiety (p=0.002), somatic symptoms (p=0.015) and neuropathic pain (p=0.03) scores than others. FM patients with Raynaud had higher anxiety (p=0.004), depression (p=0.001), somatic symptom (p<0.001) and neuropathic pain scores than others., Conclusions: The presence of which findings in FM seems to be associated with anxiety, depression, and somatization rather than ANA positivity and disease severity.

Rheumatic pathologies have a significant impact on a child's life. In adolescence in particular, providing psychological support for the young patient and his or her family enables the psychological suffering to be taken into account and helps to preserve the family dynamics.

Objective: While most existing health literacy (HL) measures focus primarily on reading comprehension, the functional, communicative and critical HL scales from Ishikawa et al. [19] aim to measure a broader HL spectrum. The objective of this study was to evaluate the validity of the Dutch translation of this instrument., Methods: Two survey studies (n = 79 and n = 209) and one cognitive interview study (n = 18) were performed among samples of breast cancer patients and patients with rheumatic diseases., Results: Analyses showed the scales measured three distinct factors and convergent validity was satisfactory for communicative and critical HL. Nevertheless, the comprehension of the items and the suitability of the response options raised some problems., Conclusion: The HL scales seem promising to measure a broad definition of HL. By revising some of the items and response options as proposed in this article, the scale will become more understandable for people with low HL skills, which might increase the content validity and the distributional properties of the scale., Practice Implications: The scale should be revised and revalidated. An improved version should be used in practice to gain insight into HL levels of patients. This will help to develop suitable education programs for people with low HL skills., (Copyright © 2012 Elsevier Ireland Ltd. All rights reserved.)

Patients with rheumatic disease must adjust psychosocially and behaviourally in order to manage the impact of symptoms and treatment on their daily lives, and the emotional consequences of the disease. However, patients can improve their well-being by taking a proactive role in self-management, for example by using coping strategies. Support for patient self-management from clinical teams usually comprises information and advice on disease management; however, this largely didactic approach often focuses on the biomedical aspects of rheumatic disease, without addressing how these aspects interact with psychosocial factors to influence health behaviours and thus outcomes. A cognitive-behavioural approach based on the biopsychosocial model of rheumatic disease can facilitate the identification of effective self-management strategies through collaboration between patients and clinicians. Most patients do not require intense cognitive-behavioural therapy from a clinical psychologist; rather, basic cognitive-behavioural techniques and tools could be used by rheumatology clinical teams to expand and enhance the support already offered to patients.

Coping flexibility may be beneficial for the adjustment in the context of a progressive and unpredictable course of chronic rheumatic diseases. The aim of this study was to develop and initially validate a self-report measure that assesses coping flexibility. Study participants were 147 outpatients with chronic rheumatic diseases (73% women, mean age 59 (range 20-79) years). Principal axis factoring analysis with oblique rotation was applied and internal consistency was determined. To investigate the initial validity of the coping flexibility questionnaire (COFLEX), hypothesised correlations with psychological and physical adjustment outcomes, pain, and coping strategies were examined. Factor analysis yielded a two-factor model of coping flexibility with acceptable internal consistency: versatility, the capability of switching between assimilative and accommodative coping strategies according to personal goals and situational demands (α = .88) and reflective coping, the capability of generating and considering coping options, and appraising the suitability of a coping strategy in a given situation (α = .70). Versatility was correlated with adaptive ways of coping and psychological adjustment, but not with physical adjustment and pain. Reflective coping was correlated with both adaptive and maladaptive ways of coping, but it was not correlated with adjustment outcomes. In conclusion, the current study suggests acceptable internal consistency of the COFLEX. Preliminary evidence of the validity of the versatility dimension is indicated, while the validity of reflective coping could not be firmly established. The associations of versatility with favourable adjustment to the disease warrant future confirmatory and validity research in larger samples of patients with chronic rheumatic diseases.

The aim was to explore the relationship of youth age and sex to depressive symptoms and illness attitudes in youth with epilepsy and juvenile rheumatic disease. Youth with epilepsy or juvenile rheumatic disease between the ages of 7 and 19 years completed measures of depressive symptoms and illness attitudes. A significant 3-way interaction, Disease Group × Sex × Age, was found when predicting depressive symptoms. Post hoc analyses revealed a simple 2-way Disease Group × Age interaction for males and females. Younger males and adolescent females with epilepsy reported greater depressive symptoms than younger males and adolescent females with a juvenile rheumatic disease. Youth with epilepsy reported more negative illness attitudes than youth diagnosed with a juvenile rheumatic disease, but no other main effects or interactions were found. Results suggest early screening of depressive symptoms, with particular attention to younger males and adolescent females with epilepsy.

Objective: To evaluate the effects of a mindfulness-based group intervention, the Vitality Training Programme (VTP), in adults with inflammatory rheumatic joint diseases., Methods: In a randomised controlled trial, the VTP-a 10-session mindfulness-based group intervention including a booster session after 6 months-was compared with a control group that received routine care plus a CD for voluntary use with mindfulness-based home exercises. The primary outcome was psychological distress measured by the General Health Questionnaire-20. Self-efficacy (pain and symptoms) and emotion-focused coping (emotional processing and expression) were used as co-primary outcomes. Secondary outcomes included pain, fatigue, patient global disease activity, self-care ability and well-being. Effects were estimated by mixed models repeated measures post-intervention and at 12-month follow-up., Results: Of 73 participants randomised, 68 completed assessments post-intervention and 67 at 12 months. Significant treatment effects in favour of the VTP group were found post-treatment and maintained at 12 months in psychological distress (adjusted mean between-group difference -3.7, 95% CI -6.3 to -1.1), self-efficacy pain (9.1, 95% CI 3.4 to 14.8) and symptoms (13.1, 95% CI 6.7 to 19.3), emotional processing (0.3, 95% CI 0.02 to 0.5), fatigue (-1.1, 95% CI -1.8 to -0.4), self-care ability (1.0, 95% CI 0.5 to 1.6) and overall well-being (0.6, 95% CI 0.1 to 1.2). No significant group differences were found in emotional expression, pain or disease activity., Conclusion: The VTP improved most primary and secondary outcomes compared with individual use of CD exercises. Improvements were maintained at 12 months, suggesting that the VTP is a beneficial complement to existing treatments for patients with inflammatory rheumatic joint diseases.

The nomads are defined as patients related to multiple practicians of the same speciality or different specialities for the same symptomatology during a certain period. The objectives of this investigation were to evaluate the prevalence of medical nomadism of the followed patients in rheumatology and compare their profile with those patients followed in neurology and gastroenterology. A multicentric transverse study (September 2009-March 2010) was conducted in three departments of CHU Ibn Sina Rabat-Salé, Morocco; rheumatology, gastroenterology and neurology. Only patients seen in external consultations were included. Patients' socio-economic and demographic background (familial status, instruction level, monthly revenue, social assistance) were recorded, as well as the clinical parameters related to the pathology (pathology, duration of the illness, diagnosis final time). A questionnaire containing variables on the patients' state concerning diagnosis, satisfaction degree of the patients and other variables evaluated the notion of taking medication and the practice of alternative medicine. Medical nomadism has been defined by the consultation for the same symptomatology of three different practicians, either of the same speciality or of different specialities during the study period of 6 months. There were 250 patients included in this study (150 patients in rheumatology, 50 in gastroenterology and 50 in neurology), the mean age was 46 ± 13 years and females dominated (65.6%). The average duration of the evolution was 7 ± 5 years, 35% of the patients were illiterate, 30% had a primary school education, 22% had a secondary school education and 13% had a university-level education. Sixty-two percent of the patients were jobless, 27% were workers, 9% were the functionary and 2% were the based liberal. Fifty-six percent had no social assistance. Rheumatoid arthritis and degenerative pathology were the most frequent diagnoses in rheumatology, being 20% and 40%, respectively. In gastroenterology, the most frequent pathologies were functional colopathy (25%) and proctology (20%), and migraine (42%) in neurology. The global prevalence of nomadism was 51%; 36% in rheumatology, 58% in neurology and 86% in gastroenterology. The associated factors of nomadism phenomena in rheumatology were: the satisfaction degree of the patient (P = 0.001), the wrong beliefs (P = 0.007), the practice of alternative medicine (P = 0.009), the pathology (P = 0.01) and the psychic profile (P = 0.001). Our study suggests that medical nomadism is frequent. It seems to be more frequent in the gastroenterology area, was linked with the degree of the patients' satisfaction, the alternative medicine practice and the type of the pathologies. Other studies of a high level would be necessary.

Introduction: Empowerment is a central concept in both rheumatology and diabetes care. A Swedish empowerment instrument for patients with rheumatic diseases has not been created before now. The aim of the present study was to determine the psychometric properties of the Swedish Rheumatic Disease Empowerment Scale, SWE-RES-23, such as construct validity, internal consistency reliability, inter-item correlations and discriminant validity., Methods: The already existing instrument, the Swedish Diabetes Empowerment Scale (SWE-DES-23), was adapted for use in patients with rheumatic diseases. The adapted instrument was called the SWE-RES-23. In 2009, 260 patients with rheumatic diseases from a rheumatology unit in Sweden completed the instrument. Construct validity was tested by using exploratory factor analysis. Internal consistency reliability was tested by the use of Cronbach's α-coefficient. In order to determine unidimensionality of the empowerment subscales, inter-item correlations were calculated. To establish discriminant validity, an item about self-perceived health from the Short Form (SF) 36 was used in addition to the SWE-RES-23., Results: The exploratory factor analysis resulted in five factors (empowerment subscales) with eigenvalues >1, explaining 64.1% of the total variance: Goal achievement and overcoming barriers to goal achievement; Self-knowledge; Managing stress; Assessing dissatisfaction and readiness to change; and Support for caring. Cronbach's α values ranged from 0.59 to 0.91, and the value for the total score was 0.92., Conclusion: The results support the possibility of adapting the SWE-DES-23 for use in patients with rheumatic diseases. The SWE-RES-23 shows acceptable psychometric properties, in terms of construct validity and internal consistency reliability. To validate the SWE-RES-23 fully, further studies are needed, with a focus on test-retest correlations., (Copyright © 2012 John Wiley & Sons, Ltd.)

The prevalence of clinical anxiety and clinical depression in rheumatic diseases is about twice the prevalence seen in the general population. At a milder level, the occurrence of psychological distress that does not fulfil diagnostic criteria of anxiety and depression is even higher. Evidence indicates that this high prevalence is multifactorial. Correlational studies suggest that possible factors for anxiety and depression include the suffering accompanying somatic symptoms, functional limitations, pro-inflammatory cytokines, helplessness due to the uncontrollable, unpredictable and progressive nature of the disease, and other factors associated with having a chronic disease. This article reviews the prevalence and diagnosis of anxiety and depression in rheumatic diseases and it examines the contents and the impact of psychological interventions to address these difficulties for patients., (Copyright © 2012 Elsevier Ltd. All rights reserved.)

Objective: To describe the development and feasibility of the integration of a cognitive-behavioral therapy (CBT) within a multimodal rehabilitation program for highly distressed patients with rheumatic diseases., Methods: Development included the detailed specification of the theoretical and empirical-based underpinnings of the CBT and the comprehensive description of its design and content. Feasibility was assessed by percentage of eligible patients, attrition and attendance rates, and patient satisfaction., Results: The developed CBT component seeks to decrease psychological distress and improve activities and participation across multiple life domains by accomplishing behavior change, acceptance, and coping flexibility. Motivational interviewing was applied to endorse patients' own reasons to change. Forty percent (35/87) of the eligible patients were admitted to the program. Attendance rate (>95%) was high. Patient satisfaction ranged from 6.8 to 8.0 (10-point scale)., Conclusion: Integrating CBT within a multimodal rehabilitation program is feasible. An acceptable proportion of the intended patient sample is eligible and patient's attendance and satisfaction is high., Practice Implications: Patients with impaired physical and psychosocial functioning despite adequate medical treatment pose a great challenge. Their treatment outcome may be improved by screening and selecting highly distressed patients and offering them a CBT embedded in multimodal rehabilitation program., (Copyright © 2011 Elsevier Ireland Ltd. All rights reserved.)

This report examines day-to-day variability in rheumatology patients' ratings of pain and related quality-of-life variables as well as predictors of that variability. Data from 2 studies were used. The hypothesis was that greater psychological distress (i.e., depression and anxiety) and poorer coping appraisals (i.e., higher pain catastrophizing and lower self-efficacy) are associated with more variability. Electronic daily diary ratings were collected from 106 patients from a community rheumatology practice across 28 days (study 1) and from 194 osteoarthritis patients across 7 days (study 2). In multilevel modeling analyses, substantial day-to-day variability was evident for all variables in both studies, and individual patients differed considerably and somewhat reliably in the magnitude of their variability. Higher levels of depression significantly predicted greater variability in pain, as well as in happiness and frustration (study 1). Lower self-efficacy was associated with more variability in patients' daily satisfaction with accomplishments and in the quality of their day (study 2). Greater pain catastrophizing and higher depression predicted more variability in interference with social relationships (study 2). Anxiety was not significantly associated with day-to-day variability. The results of these studies suggest that individual differences in the magnitude of symptom fluctuation may play a vital role in understanding patients' adjustment to pain. Future research will be needed to examine the clinical utility of measuring variability in patients' pain and well-being, and to understand whether reducing variability may be an important treatment target., (Copyright © 2012 International Association for the Study of Pain. Published by Elsevier B.V. All rights reserved.)

In this study, we evaluated the relationship between enthesitis and clinical, laboratory and quality-of-life parameters in ankylosing spondylitis (AS) in Moroccan patients. Seventy-six patients were included in this cross-sectional study according to the modified New York criteria for AS. All patients had enthesitis involvement. Clinical and biological parameters were evaluated. Enthesitis were assessed by two indices: Mander Enthesis Index (MEI) and Maastricht Ankylosing Spondylitis Enthesitis Score (MASES). Disease activity was evaluated by the Bath Ankylosing Spondylitis Disease Activity Index (BASDAI). Functional impact was assessed by the Bath Ankylosing Spondylitis Functional Index (BASFI). The quality of life was measured by the Short form-36 (SF-36). Severity of enthesitis was significantly correlated with disease activity, functional disability and degradation of quality of life. There was no relation between enthesitis indices and disease duration or laboratory parameters. The clinical assessment of enthesitis in AS is an important outcome measure, and enthesitis indices could be used to evaluate disease activity in patients with AS.

Musculoskeletal disorders are the major causes of the pain in the elderly population. Rheumatic conditions restrict participation in activities and mobility, as well as cause difficulties in the execution of self-care tasks. The assessment of health related quality of life (HRQOL) is an important indicator of the impact of rheumatic diseases on the physical, mental and social aspects. This study aims to analyze the influence of rheumatic diseases and chronic joint symptoms on the quality of life of the elderly (n=2209) aged 60 years or over. The effects of rheumatism and joint symptoms on quality of life were investigated by the Outcome Study Short-Form Health Survey (SF-36), and this analysis was adjusted for age and sex. The univariate analysis of variance and analysis of covariance (ANOVA and ANCOVAS) were used for statistical procedures, p≤0.05. Rheumatic diseases affected: functional capacity (F(1, 2012))=10.9 and pain (F(1, 2012))=34.77. Joint symptoms affected all components of the SF-36: physical functioning (F(1, 2012))=10.9; physical problems (F(1, 2012))=72.61; pain (F(1, 2012))=164.29; general health (F(1, 2012))=71.95; vitality (F(1, 2012))=55.78; social aspect (F(1, 2012))=73.14; emotional aspect (F(1, 2012))=49.09 and mental health (F(1, 2012))=44.72. There was a significant impact of rheumatic diseases on physical health, and that joint symptoms affected self-evaluations of physical and mental health. These results will contribute to a better understanding of this systemic disease and will be used for planning effective interventions., (Copyright © 2011 Elsevier Ireland Ltd. All rights reserved.)

Objective: To examine the factor structure and convergent validity of the Illness Intrusiveness Scale--Parent Version in mother and fathers of children and adolescents ages 7 to 18 (M = 13.56 years, SD = 2.67) diagnosed with a juvenile rheumatic disease., Design: Parents of 122 children and adolescents (82 girls, 40 boys) completed the Illness Intrusiveness Scale-Parent Version, and both parents and children and adolescents completed measures of functional disability, general distress, and illness uncertainty. An exploratory factor analysis was conducted on the Illness Intrusiveness Scale--Parent Version to identify the factor structure. The factors were then compared with parent- and child-report measures of functional disability, general distress, and uncertainty. Finally, analyses were conducted to determine whether the magnitude of the correlations was significantly different between factors for parents and children and adolescents., Results: The Illness Intrusiveness Scale--Parent Version was found to have a two-factor structure. The Relationships/Personal Development factor contained items related to self-fulfillment and interactions with others, and the Instrumental factor contained items related to health and work. These factors were found to have good internal consistency and were significantly correlated with measures of parent-reported functional disability and parent- and youth-reported distress and uncertainty. The magnitude of these correlations was also found to differ depending on informant and outcome measure., Conclusion: The Illness Intrusiveness Scale--Parent Version appears to be a valid measure for use in parents of children with juvenile rheumatic disease.

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., 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)., 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., 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.

Purpose: To explore how patients experience the process and personal impact of deriving outcomes from a rheumatological rehabilitation program., Methods: Semi-structured interviews were conducted with 23 patients with inflammatory rheumatic diseases approximately 2 months after a 4-week hospital based multidisciplinary rehabilitation program. A thematic analysis was applied., Results: Overarching themes were increased dignity and self-respect. Initial uncertainty regarding illness management was exchanged with confident coping and of becoming an active agent in ones own life. Strategies and coping tools tried out during the rehabilitation stay, do by their experienced effect become primary sources of gained insight into illness and symptom manifestation. Both elements give a sense of control and influence self-confidence and motivation to engage in self-management. The process from gained insight and experienced effect of coping tools, to active self management, is however, not automatic. Psychological factors play a key role, and there is a need to take individual psychological themes into account and tailor interventions accordingly., Conclusions: Specialized multidisciplinary rehabilitation is an ongoing active process, in which psychological factors play a key role and must be accounted for. Well targeted rehabilitation has the potential to create outcomes of major personal impact.

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.

The management of rheumatoid arthritis (RA) depends more on the patient history than most other chronic diseases. A patient questionnaire provides a uniform, quantitative, protocolized, "scientific" patient history, with documented prognostic significance for work disability and mortality in RA greater than radiographs and laboratory tests and capacity to distinguish active from control treatment in clinical trials and to monitor clinical care with equivalent or greater significance than joint counts or laboratory tests. Therefore, a "scientific" approach to care of a person with a rheumatic disease involves review of patient function, pain, global status, fatigue, RAPID3, review of systems, self-report joint count, and recent medical history on an MDHAQ before conversation with the patient. This practice may be viewed as analogous to a doctor reviewing blood pressure, hemoglobin A1c, viral load, or radiograph before meeting with a patient who has hypertension, diabetes, HIV, or a healing fracture to provide a roadmap or agenda for the visit. Some sites have implemented RAPID3 without the remainder of MDHAQ, a practice that is discouraged. The MDHAQ requires only 5 to 10 minutes of the patient's time and involves a single sheet of paper, which is needed for a simple RAPID3, or even a patient global estimate of status to score a DAS28 or CDAI. Completion of MDHAQ/RAPID3 by each patient at each visit in the infrastructure of care with review by the doctor helps prepare the patient for the visit, improves doctor-patient communication, saves time for the doctor, and provides a roadmap or agenda for the visit.

Objective: To obtain understanding of how patients with rheumatic diseases experienced participation in an emotion-focused group intervention in terms of influences on their emotional well-being and coping behavior and the processes whereby these influences arose., Methods: The intervention, Vitality Training (VTP), was conducted in 10 group sessions over 4 months. Qualitative data were collected from 10 focus group interviews (n=69) two weeks after the intervention. Data were analyzed with a qualitative content analysis approach., Results: Five categories were identified from the analyses: (1) recognizing oneself as both ill and healthy, (2) recognizing own emotions, (3) awareness of own needs, (4) being part of a community and (5) being recognized as a credible patient., Conclusion: The VTP addressed participants' awareness of emotional and bodily reactions in a process-oriented and supportive group. The program had enhanced participants' recognition of their disease-related emotions and helped them to more actively relate to their own needs., Practical Implications: This study has highlighted how a process-oriented group intervention that combines topics related to life, rather than disease, and learning methods that enhance emotional awareness and adaptive emotional expression can enhance emotional well-being and coping behavior in patients with rheumatic diseases., (Copyright © 2011 Elsevier Ireland Ltd. All rights reserved.)

Objective: To evaluate the duration of etanercept (ETN) treatment and motives for discontinuation in our local cohort of patients with rheumatic pathology and compare them to the group with other biological treatments., Patients and Methods: Prospective observational cohort study. Disease diagnosis, start and end date and motive for discontinuation were recorded. Survival estimation was explored using Kaplan-Meier analysis with remaining patients censored at 1-year, 2-years and 5-years follow-up., Results: Ninety-two (45%) out of 205 patients started ETN treatment. Disease diagnoses recorded were: 48% rheumatoid arthritis, 33% ankylosing spondylitis, 11% psoriatic arthritis, 8% others (juvenile idiopathic arthritis, inflammatory bowel disease related spondylitis, SAPHO syndrome). 52% of patients are still on the drug. The motives for discontinuation were: inefficacy (65%), adverse events (33%) and lack of compliance (2%). Two patients discontinued ETN due to prolonged disease control. Adverse events were: infection (4 patients), post-injection skin reaction (3), uveitis (3), neoplasia (2) and others (3). Using a Kaplan-Meier analysis, at 1-year 64% (CI(95%) 54-74) of patients with ETN treatment had not experienced treatment failure, at 2-years, 59% (48-69) and at 5-years, 43% (30-52). With the rest of biologicals estimated survival was 61% (51-68), 47,5% (40-55) and 23% (10,5-32) respectively. Statistical analysis revealed significant differences (log-rank: P=.024; Breslow: P=.068; Tarone-Ware: P=.040)., Conclusions: In our cohort of patients treated with ETN the estimated survival was better than patients treated with other biological drugs at 1-year, 2-years and 5-years., (Copyright © 2011 Elsevier España, S.L. All rights reserved.)

Objective: The Patient Health Questionnaire 9 (PHQ-9) was developed to screen for depressive disorders in community, primary care, and medical settings. We aimed to estimate its diagnostic accuracy, internal consistency, reliability, and convergent validity in diagnosing major depressive disorder (MDD) in Greek patients with rheumatologic disorders., Methods: In a 2-phase sampling design study, we recruited 475 patients with established rheumatologic disorders. One of 2 of the high scorers (PHQ-9 score ≥9, n = 85) and 1 of 3 of the low scorers (PHQ-9 score 0-8, n = 128) were interviewed using the Mini International Neuropsychiatric Interview to confirm MDD. A receiver operator characteristic curve analysis was performed to confirm the optimum threshold value. The scale's dimensional structure was tested with factor analysis, and internal consistency reliability was assessed with Cronbach's alpha. Psychological distress (Symptom Check List-90-Revised [SCL-90-R]), disability (Health Assessment Questionnaire disability index), and health-related quality of life (HRQOL; World Health Organization Quality of Life Instrument [WHOQOL-BREF]) were also assessed to test convergent validity with bivariate correlations., Results: At an optimum threshold of 10, the PHQ-9 showed a sensitivity of 81.2% and a specificity of 86.8%. The area under the curve was 0.91. The PHQ-9 presented unidimensional structure with good scale reliability (α = 0.82). The PHQ-9 score presented the greatest correlations with SCL-90-R depression (r = 0.736) and WHOQOL-BREF mental HRQOL scales (r = -0.571), and all other correlations with disability and HRQOL were in the expected direction., Conclusion: At a cutoff of 10, the PHQ-9 is an accurate, reliable, and valid measure for screening for MDD among Greek rheumatologic patients., (Copyright © 2011 by the American College of Rheumatology.)

Stress resilience factors, and interventions to ease stress and enhance resilience, are gaining increasing attention for the treatment of rheumatic conditions. This Review presents a digest of empirical work on the factors that determine the risk of adapting poorly to a rheumatic condition, and on the resilience factors that counteract such risks. We consider the types of stress-management and resilience treatments that are most effective in promoting the physical and psychological functioning of patients at risk of long-term adjustment problems. Prospective research shows that cognitive-behavioral and social risk and resilience factors predict the long-term physical and psychological functioning of patients with rheumatic conditions. Furthermore, validated screening instruments are becoming increasingly useful in clinical practice to identify and select patients at risk. Stress-management and resilience interventions offer promising ways to improve the long-term functioning of patients. These treatment methods might be especially useful when they are tailored to the specific risk and resilience factors of patients, and when they incorporate innovative approaches to the delivery of services, including internet applications such as eHealth, to increase efficiency and availability of treatments, and to optimize patient empowerment in rheumatic conditions.

Aim: This paper is a report of a study that explores and describes the meaning of the phenomenon of health-promoting self-care as experienced by people living with rheumatic diseases., Background: People with rheumatic diseases estimate health status as low and health belief and health status influence self-care behaviours. Several self-care behaviours are used in the efforts to mitigate the diseases., Method: The study had a descriptive phenomenological approach based on a reflective life-world perspective. Data were gathered in 2007 by unstructured open-ended interviews with 12 individuals living with rheumatic diseases., Findings: The meaning of health-promoting self-care as experienced by people living with rheumatic diseases was that self-care takes place against a background of continual hope and belief to influence health in positive ways. Self-care was a way of life and implied being ready to understand and respond to signals from the body. Three inter-related constituents elucidated their experiences: dialogue, power struggle and choice. Self-care was experienced as dialogues with the body and with the immediate environment. In order to respond to signals from the body, power struggles were required to be entered into when fighting the diseases. Choices were required to be made and things that were beneficial for the body were prioritized., Conclusion: In this study, the meaning of health-promoting self-care as experienced by people living with rheumatic diseases was that self-care was a way of life. This meant to be ready to understand and respond to signals from the body. Self-care required dialogues, power struggles and choices., (© 2011 Blackwell Publishing Ltd.)

Objective: : This study sought to examine the differential effect of youth age on the association between parental uncertainty and both parent distress and youth depressive symptoms within the context of juvenile rheumatic disease., Method: : The sample comprised 51 youth aged 9 to 17 years diagnosed with a juvenile rheumatic disease and their parents. Youth completed a measure of depressive symptoms (i.e., Children's Depression Inventory); parents completed measures of illness uncertainty (i.e., Parental Perceptions of Uncertainty Scale) and parental distress (i.e., Brief Symptom Inventory)., Results: : Parental uncertainty demonstrated a significant main effect on both parent distress and youth depressive symptoms. However, these main effects were qualified by significant parental uncertainty × youth age interactions. Parental uncertainty was significantly related to parent distress for both younger and older youth but was only significantly related to youth depressive symptoms in the sample of older youth., Conclusion: : Parental uncertainty due to illness seems to be more predictive of both parent and youth distress with increasing youth age. These findings indicate that the impact of parental illness uncertainty on adjustment outcomes is pronounced as children transition into developmental periods of increasing autonomy and independence.

Background: Rheumatic diseases have a significant adverse impact on the individual from physical, mental and social aspects, resulting in a low health-related quality of life (HRQL). There is a lack of longitudinal studies on HRQL in people with rheumatic diseases that focus on factors promoting HRQL instead of risk factors. The aim of this study was to investigate the associations between suggested health promoting factors at baseline and outcome in HRQL at a 12 month follow-up in people with rheumatic diseases., Methods: A longitudinal cohort study was conducted in 185 individuals with rheumatic diseases with questionnaires one week and 12 months after rehabilitation in a Swedish rheumatology clinic. HRQL was assessed by SF-36 together with suggested health factors. The associations between SF-36 subscales and the health factors were analysed by multivariable logistic regressions., Results: Factors predicting better outcome in HRQL in one or several SF-36 subscales were being younger or middle-aged, feeling painless, having good sleep structure, feeling rested after sleep, performing low effort of exercise more than twice per week, having strong sense of coherence (SOC), emotional support and practical assistance, higher educational level and work capacity. The most important factors were having strong SOC, feeling rested after sleep, having work capacity, being younger or middle-aged, and having good sleep structure., Conclusions: This study identified several factors that promoted a good outcome in HRQL to people with rheumatic diseases. These health factors could be important to address in clinical work with rheumatic diseases in order to optimise treatment strategies.

Objective: To explore how intimate relationships and sexuality are influenced by rheumatic diseases and to describe self-management strategies used to manage disease consequences., Methods: To ensure that data were grounded in patients' language and experiences, individual and focus group interviews were conducted. Purposeful sampling was used to ensure variation in age, sex, disease duration, diagnosis, and marital status among the informants. Participants were men and women ages 18 years or older, were diagnosed with inflammatory rheumatic disease by a rheumatologist, and had a disease duration of ≥2 years., Results: The mean age of the 23 participants was 44 years, the mean disease duration was 13.6 years, and the mean ± SD modified Health Assessment Questionnaire score was 1.58 ± 0.46. Four key themes summarized the main issues described by the informants: between disease and normality, relational aspects, disease-related sexual challenges, and self-management strategies. The results reveal that the disease constituted a disruption in life, requiring a new orientation of sexual identity and relationship. Participants' experiences of sexuality went beyond specific sexual activity, including aspects such as body image and relational issues, illustrating a multidimensional perception of sexuality. A large inter- and intrapersonal variety of impact and a wide range of management strategies were reported., Conclusion: This study shows that sexuality is a vital area of life for people living with arthritis. It is a source of physical pleasure and intimacy with their partner, but may cause anxiety and distress when affected by rheumatic disease. However, various self-management strategies are applied to enhance intimate relationships and sexual activity. Knowledge and openness concerning sexual issues need to be emphasized as part of the competence of health professionals and researchers., (Copyright © 2011 by the American College of Rheumatology.)

Persistent and disabling pain is the hallmark of osteoarthritis, rheumatoid arthritis, fibromyalgia, and various other rheumatologic conditions. However, disease severity (as measured by 'objective' indices such as those that employ radiography or serology) is only marginally related to patients' reports of pain severity, and pain-related presentation can differ widely between individuals with ostensibly similar conditions (for example, grade 4 osteoarthritis of the knee). Increasing evidence in support of the biopsychosocial model of pain suggests that cognitive and emotional processes are crucial contributors to inter-individual differences in the perception and impact of pain. This Review describes the growing body of literature relating depression and catastrophizing to the experience of pain and pain-related sequelae across a number of rheumatic diseases. Depression and catastrophizing are consistently associated with the reported severity of pain, sensitivity to pain, physical disability, poor treatment outcomes, and inflammatory disease activity, and potentially with early mortality. A variety of pathways, from cognitive to behavioral to neurophysiological, seem to mediate these deleterious effects. Collectively, depression and catastrophizing are critically important variables in understanding the experience of pain in patients with rheumatologic disorders. Pain, depression, and catastrophizing might all be uniquely important therapeutic targets in the multimodal management of a range of such conditions.

The placebo effect is often poorly understood or confused with evaluation bias or spontaneous improvement, particularly when study inclusion criteria select patients at the peak of their symptoms. Cerebral imaging studies have confirmed that the placebo effect exists, although it is now known to involve a combination of conditioned reflexes and reward anticipation. The magnitude of the placebo effect can be evaluated by randomly dividing patients into three groups, one of which receives no treatment at all; by crossover studies; or by the newly developed open-hidden study design. This last design has established that rebound effects can occur after placebo discontinuation, and other experiments have shown that anxiety is associated with a weaker placebo response. This anti-placebo effect of anxiety, similar to the nocebo effect, may involve the release of cholecystokinin. The strength of the placebo effect varies across procedures and joints. A marked placebo effect can be seen in rheumatology patients, as shown recently by two high-quality double-blind studies that found no difference between vertebroplasty and a sham procedure. Effective blinding is crucial both to obtain a strong placebo effect and to separate an intrinsic effect from a placebo effect. Beliefs of the patients and physicians regarding the active drug and the existence and strength of the placebo effect could also be usefully evaluated throughout clinical studies., (Copyright © 2010 Société française de rhumatologie. Published by Elsevier SAS. All rights reserved.)

Fatigue is a prominent symptom in many rheumatic diseases. Numerous factors contribute to cause fatigue, which can be a source of frustration for the patients and physicians, as the treatment often fails to produce the desired improvement. Diagnostic guidelines direct insufficient attention to the various semiological patterns of fatigue seen in rheumatic diseases. This update describes three main patterns of fatigue, depending on whether the source is physical or mental: muscle weakness in patients with neuromuscular disease; asthenia related to organic disease with excessive energy expenditure, deficient energy production (e.g., endocrine disorders), or inadequate recovery; and weariness due to the impact of stress and depression on quality of life. The prevalence of each pattern in various rheumatic diseases is discussed. This update underlines the practical benefits provided by a detailed semiological analysis of fatigue in patients with rheumatic disease and emphasizes the marked predominance of weariness due to stress and depression, on which the personality of the patient and inadequacy of social support systems may exert a major influence. Serotonin reuptake inhibitors (SSRIs) may be valuable in patients with fatigue not only because they improve the mental status, but also via their recently demonstrated anti-inflammatory effects., (Copyright © 2010 Société française de rhumatologie. Published by Elsevier SAS. All rights reserved.)

Quantitative measurement according to a laboratory test such as hemoglobin A1c or creatinine provides a "gold standard" for care of every individual with a specific diagnosis. By contrast, no single "gold standard" quantitative measure is available in rheumatic diseases. Laboratory tests are limited, and clinical decisions are based more on patient history and physical examination than laboratory tests. A quantitative patient history is provided by a self-report questionnaire as standardized, "scientific" data to compare from one visit to the next. Patient questionnaires for usual clinical care emphasize feasibility, acceptability to patients and physicians, and clinical utility, which are not considered in research questionnaires. Development of a multidimensional health assessment questionnaire (MDHAQ) over 27 years is seen as a continuous quality improvement (CQI) rather than research activity, to account for all rather than a few selected patients for a research study. Both the traditional HAQ and MDHAQ are 2-page questionnaires, easily completed by patients in 5 to 10 minutes, although scoring a HAQ disability index (HAQ-DI) requires 42 seconds, compared to 5 seconds for an MDHAQ/RAPID3. The MDHAQ includes, within 2 pages: complex activities, psychological queries, visual analog scales (VAS) as 21 numbered circles rather than 10-cm lines, a fatigue VAS, RADAI (rheumatoid arthritis disease activity index) self-report joint count, traditional "medical" review of systems and recent medical history, and demographic data, as well as a data management system that incorporates medication data and laboratory tests, reports for physicians and patients, and flow sheets to compare a current visit with a previous visit.

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, Cronbach's α = 0.76; subscale alienation, six items, Cronbach's 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. R(2) 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.

Purpose: To investigate whether the Stanford Health Assessment Questionnaire Disability Index (HAQ-DI) can serve as a generic instrument for measuring disability across different rheumatic diseases and to propose a scoring method based on item response theory (IRT) modeling to support this goal., Methods: The HAQ-DI was administered to a cross-sectional sample of patients with confirmed rheumatoid arthritis (n = 619), osteoarthritis (n = 125), or gout (n = 102). The results were analyzed using the generalized partial credit model as an IRT model., Results: It was found that 4 out of 8 item categories of the HAQ-DI displayed substantial differential item functioning (DIF) over the three diseases. Further, it was shown that this DIF could be modeled using an IRT model with disease-specific item parameters, which produces measures that are comparable for the three diseases., Conclusion: Although the HAQ-DI partially functioned differently in the three disease groups, the measurement regarding the disability level of the patients can be made comparable using IRT methods.

Background: To identify incorrect beliefs and common knowledge about rheumatic diseases in the general population., Methods: Participants were selected during the follow-up of a representative cohort of adult population of Porto, Portugal; 1626 participants completed a questionnaire that included general knowledge items about rheumatic diseases.Discrete and continuous latent variable models were used to identify knowledge flaws and the target groups. Odds ratios (OR) estimated by multinomial logistic regression, and 95% confidence intervals (95%CI) were computed to evaluate magnitude of associations., Results: A continuous latent variable model identified two dimensions: one related to general beliefs (latent 1) and another concerning characteristics, treatment and impact of rheumatic diseases (latent 2). A 3-class latent variable model refined these results: the first class presented the lowest probabilities of correct answer for items associated with the first latent (mean of 39%), and the second class presented the lowest probabilities of correct answer for items with the second latent (mean of 62%). The third class showed the highest probability of a correct answer for almost all the items (mean of 79%). The age and sex standardized prevalence of the classes was 25.7%, 30.8% and 43.5%.Taking class 2 as reference, class 1 was positively associated with the presence of rheumatic diseases (OR = 2.79; CI95% = (2.10-3.70)), with females (OR = 1.28 CI95% = (0.99-1.67)) and older individuals (OR = 1.04; CI95% = (1.03-1.05)), and was negatively associated with education (OR = 0.84; CI95% = (0.81-0.86)); class 3 was positively associated with education (OR = 1.03; CI95% = (1.00-1.05)) and the presence of rheumatic diseases (OR = 1.29; CI95% = (0.97-1.70))., Conclusions: There are several knowledge flaws about rheumatic diseases in the general public. One out of four participants considered false general beliefs as true and approximately 30% did not have detailed knowledge on rheumatic disease. Higher education and the presence of disease contributed positively to the overall knowledge. These results suggest some degree of effectiveness of patient education, either conducted by health professionals or self-driven.

A chronic disease may have an adverse impact on patients' quality of life and on their relationship styles. If this occurs in a mother, the related emotional and physical distress can interfere with baby holding, impacting on the antenatal maternal-foetal attachment and on the upbringing and development of the baby. Ineffective holding leads to the persistence of a condition of 'vulnerability to stress' and the possible development of psychosomatic problems in the offspring. In this paper we present our experience and a review from the current literature on the psychological aspects of pregnancy and parenthood in women with rheumatic diseases (RD) and children's development. To ameliorate family global quality of life, different experts (the rheumatologist, the obstetric, the neonatologist, the psychologist and the neuropsychiatric experts) should cooperate in teamwork to keep the patients' needs integrated. In particular, the neuropsychiatric intervention might support the patients and their partners throughout the experience of pregnancy and parenthood and prevent the occurrence of psychopathologic traits.

Objectives: Studying the characteristics of resilience may help to explain how, in the face of a chronic disease, people are able to cope in productive and effective ways. The Wagnild and Young Resilience Scale (RS) is an appropriate instrument to study resilience and has already been translated from the original English version into several languages. The aim of this study was to validate the Italian version of the RS, a 25-item scale ranging from 25 to 175 where higher scores indicate stronger resilience., Methods: The Minimal Translation Criteria were followed to translate the scale which was then filled out by 1090 students to assess the reliability, stability, internal consistency and concurrent validity., Results: Time stability was assessed in a sample of 117 students (M age=20.18 yr, SD 1.25) by test-retest correlation (r=0.78). RS reliability was evaluated in a second sample of 973 students (M age=16.95 yr, SD 1.50) with RS mean of 126.6 (SD 17.4). Concurrent validity was assessed by correlation with General Health Questionnaire (r=-0.51), Ego-Resilience Scale (r=0.63) and Beck Depression Inventory (r=-0.45). Internal consistency was evaluated by Cronbach alpha (α=0.84). Principal component analysis was performed on 24 out of the 25 items and resulted in six components., Conclusions: Our data indicated that the 24-item Italian version of the RS scale can be considered a useful instrument to measure resilience and can be used by healthcare staff to help patients cope effectively with stressful situations such as rheumatic and other chronic diseases.

Objectives: To compare health-related quality of life (HRQOL) between younger and older patients with established rheumatic disorders and to assess the relative impact of a number of psychosocial parameters on HRQOL., Methods: In a cross-sectional study of 320 patients (245 < 65 and 75 > or = 65 years old, response rate: 74.9%) with various rheumatic disorders (rheumatoid arthritis, 168; systemic lupus, 56; scleroderma, 56; and Sjogren's syndrome, 40) attending a follow-up clinic, HRQOL was assessed by the WHOQOL-BREF. Functional limitations (Health Assessment Questionnaire), psychological distress (Symptom Distress Checklist-90-R), defense mechanisms (Defense Style Questionnaire and Life Style Index), sense of coherence, and interpersonal difficulties (Inventory of Interpersonal Problems-40) were also assessed., Results: Older patients presented more impaired physical HRQOL (p = 0.018) and social relationships HRQOL (p = 0.041) independent of disease type, education, and pain. Functional limitations were more prominent in the older group (p = 0.030). Pain, functional limitations, and psychological distress were independently associated with physical HRQOL in both groups. Psychological distress was the only common independent correlate of social relationships HRQOL. Personality factors were significant correlates of physical and social relationships HRQOLs only in the younger group, while the impact of pain in physical HRQOL was greater for younger than older patients, as shown by a moderator analysis., Conclusion: Older patients with rheumatic diseases experience more impaired HRQOL than the younger ones, and the management and prevention of functional limitations and psychological distress should be a priority, since they are strongly associated with HRQOL. Pain also warrants attention in all age groups, but especially in younger patients. Personality factors impact on HRQOL in younger patients, and this might be relevant to psychological interventions.