Illness Identity in Inflammatory Bowel Disease.

BACKGROUND: We examined the degree to which adults with inflammatory bowel disease (IBD) integrated their illness into their identity and linked illness identity to important patient-reported outcomes. METHODS: A total of 109 adults with IBD, aged 18 to 60 (Mage = 35.93; 77% women) completed questionnaires on the four illness identity dimensions (rejection, acceptance, engulfment, and enrichment), medication adherence, depressive symptoms, life satisfaction, health status, and health-related quality of life (HRQoL). The illness identity scores of adults with IBD were compared to existing data from adults with congenital heart disease (CHD), refractory epilepsy (RE), and multisystemic connective tissue disorders (MSDs) using multivariate analyses of covariance. In adults with IBD, associations between illness identity and patient-reported outcomes were examined through hierarchical regression analyses, controlling for sex, age, illness duration, diagnosis, self-reported flares, and co-existing illnesses. RESULTS: Adults with IBD scored higher on rejection and engulfment and lower on acceptance than adults with CHD, lower on rejection but higher on engulfment than adults with RE, and higher on engulfment and enrichment but lower on rejection than adults with MSDs. Higher engulfment scores were related to more depressive symptoms, lower life satisfaction, and a poorer health status and HRQoL. In contrast, higher enrichment scores were related to more life satisfaction and a better HRQoL. Rejection and acceptance were not uniquely related to any of the outcomes. CONCLUSIONS: Adults with IBD showed relatively high levels of engulfment. Substantial associations were observed between illness identity and patient-reported outcomes, with engulfment being the strongest, most consistent predictor.

Treatment adherence in systemic sclerosis: A cross-sectional study.

BACKGROUND: Treatment adherence is an important medical and pharmaco-economical phenomenon, influenced by multiple variables. Treatment adherence in systemic sclerosis (SSc) has been poorly studied. OBJECTIVE: The aim of the present study was to assess treatment adherence in SSc patients and to identify factors associated with good and poor adherence. METHODS: We conducted a monocentric, cross-sectional, observational study. Treatment adherence was evaluated by the Compliance Questionnaire of Rheumatology (CQR). The necessity of treatment and concerns about treatment were investigated using the Beliefs about Medicines Questionnaire-Specific (BMQ-S). The Illness Perception Questionnaire-Revised (IPQ-R) assessed illness perceptions. Disease-related characteristics were collected retrospectively. RESULTS: A total of 66 patients were enrolled in this study. Of these, 47 (71.2%) had a weighted CQR score of ≤80% ("poor adherence") and 19 (28.8%) had a weighted CQR score of >80% ("good adherence"). No significant relationship between demographic, clinical or psychological factors and overall adherence could be found, except with the IPQ subscale "timeline acute/chronic" (p = 0.042). Our patient population estimated the necessity of their medication high (mean necessity score 20.5), with moderate concern beliefs (mean concern score 15.1). Subjective adherence, as self-reported by patients, was high. CONCLUSIONS: This study demonstrated low treatment adherence rates in SSc patients. We could not identify demographic, clinical or psychological factors associated with treatment adherence, except with the IPQ subscale "timeline acute/chronic". This suggests a correlation between poor adherence and the belief that the disease will be chronic without improvement over time. Symptom relief was an important motivating factor for taking medication. The treatment necessity was scored higher than treatment concerns, but the necessity beliefs were not associated with adherence.

Illness Identity in Adults with a Chronic Illness.

The present study examines the concept of illness identity, the degree to which a chronic illness is integrated into one's identity, in adults with a chronic illness by validating a new self-report questionnaire, the Illness Identity Questionnaire (IIQ). Self-report questionnaires on illness identity, psychological, and physical functioning were assessed in two samples: adults with congenital heart disease (22-78 year old; n = 276) and with multisystem connective tissue disorders (systemic lupus erythematosus or systemic sclerosis; 17-81 year old; n = 241). The IIQ could differentiate four illness identity states (i.e., engulfment, rejection, acceptance, and enrichment) in both samples, based on exploratory and confirmatory factor analysis. All four subscales proved to be reliable. Rejection and engulfment were related to maladaptive psychological and physical functioning, whereas acceptance and enrichment were related to adaptive psychological and physical functioning. The present findings underscore the importance of the concept of illness identity. The IIQ, a self-report questionnaire, is introduced to measure four different illness identity states in adults with a chronic illness.

Modifiable correlates of illness perceptions in adults with chronic somatic conditions: A systematic review.

When individuals become ill, they want to understand and give meaning to their illness. The interpretation of this illness experience, or illness perception, is influenced by a range of individual, contextual, and cultural factors. Some of these factors may be modifiable by nursing interventions. The purpose of this systematic review was to investigate which modifiable factors were correlated with illness perceptions across studies of adults with different chronic somatic diseases. Using search terms tailored to each of four electronic databases, studies retrieved were reviewed by two independent evaluators, and each relevant article was assessed for methodological quality. Results were standardized by calculating correlation coefficients. Fifteen papers on illness perceptions in a variety of chronic diseases met the inclusion criteria. All used standardized measures of illness perceptions. We identified five groups of modifiable correlates of illness perceptions: illness-related factors, psychosocial factors, medication beliefs, information provision and satisfaction with information received, and quality of care. Our findings add to the knowledge of modifiable factors correlated with illness perceptions, including the importance of illness-related factors and psychosocial factors such as anxiety and depression. Knowledge of these correlates can facilitate understanding of patients' illness perceptions and might be useful in tailoring patient education programs.

Prospective associations between illness perceptions and health outcomes in patients with systemic sclerosis and systemic lupus erythematosus: a cross-lagged analysis.

OBJECTIVE: Perceptions of patients with SLE and SSc are strongly associated with physical and psychological outcomes. This interplay is not yet fully understood. Therefore, the aim of this study was to explore the prospective associations between illness perceptions and depressive symptoms, anxiety, perceived health status and disease activity in SLE and SSc patients. METHODS: Patients with SLE and SSc from a single-centre university hospital participated in a longitudinal study spanning 1 year. At both time points, participants completed the revised Illness Perception Questionnaire; Hospital Anxiety and Depression Scale for measuring depressive symptoms and anxiety; The EuroQol five-dimensions with 5 response levels for perceived health status; and disease activity was recorded. The directionality of the associations was investigated using cross-lagged path analysis. RESULTS: A total of 128 SLE and 113 SSc patients with a mean (s.d.) age of 46.28 (14.97) and 60.17 (10.82) years, respectively, and mean (S.D.) disease duration of 13.90 (9.31) and 8.48 (9.14) years, respectively, participated. In SLE, more depressive symptoms, more anxiety and worse perceived health status predicted a relative decrease in illness coherence 1 year later. More severe perceived consequences predicted a relative decrease in perceived health status. The perception of a more chronic time course predicted an increase in depressive symptoms. In SSc, reporting more depressive symptoms and more anxiety predicted a relative decrease in illness coherence. A good perceived health status and less reporting of depressive symptoms predicted a relative decrease in perceived consequences. CONCLUSION: Evidence was obtained for reciprocal pathways between health outcomes and illness perceptions, although the predominant direction of effects was found to be from health outcomes to illness perceptions. TRIAL REGISTRATION: ClinicalTrials.gov, http://clinicaltrials.gov, NCT02655640.

Illness representations of systemic lupus erythematosus and systemic sclerosis: a comparison of patients, their rheumatologists and their general practitioners.

OBJECTIVE: Discrepancies in illness representations between patients and physicians result in treatment difficulties, decreased well-being of patients and misunderstandings and disrupted communication. Hence, the objective of this study was to compare illness perceptions of individual patients with systemic lupus erythematosus (SLE) and systemic sclerosis (SSc), their rheumatologists and their general practitioners (GPs) and explore potential differences. METHODS: This study has a cross-sectional design. Patients with SLE and SSc, who were followed at the rheumatology department of the University Hospitals Leuven (Belgium), completed the revised Illness Perception Questionnaire which measures patients' perceptions of their condition and captures nine dimensions. Physicians completed the Revised Illness Perception Questionnaire for Healthcare Professionals which consists of seven dimensions and measures perceptions of the healthcare professional regarding the disease of their patients. Intraclass correlation was performed to examine relationships between pairs of respondents; Cohen's d was used for estimating the magnitude of the difference. RESULTS: Questionnaires were sent to 284 patients of whom 241 (113 SSc and 128 SLE patients) were included. Five rheumatologists and 160 GPs participated. For both diseases, positive correlations were found for 'consequences', 'illness coherence' and 'emotional representations' among patients, rheumatologists and GPs. GPs scored higher on the 'consequences' of these diseases for the patient (d=0.71 for SLE; d=0.80 for SSc). Differences between rheumatologists and GPs were small for SSc and moderate to large for 'consequences' (d=0.56) and 'timeline acute/chronic' (d=0.95) in SLE with higher scores for GPs. CONCLUSIONS: For both diseases and among the three groups, significant correlations are detected for the dimensions 'consequences', 'illness coherence' and 'emotional representations'. Differences between rheumatologists and GPs were mainly detected in the case of SLE patients. This can have implications for the collaboration between these two groups of physicians in daily clinical practice. CLINICAL TRIAL REGISTRATION: NCT02655640; Pre-results.

Diverging illness perceptions between physicians about patients with systemic lupus erythematosus and systemic sclerosis: a vignette-based study.

Systemic lupus erythematosus (SLE) and systemic sclerosis (SSc) are complex chronic auto-immune diseases characterized by multiple organ involvement, comorbidities, and complications. This complexity results in a need for a multidisciplinary management and treatment of SLE and SSc by physicians from a number of medical disciplines, all of who may have different perceptions concerning the condition of a particular patient. The aim of this study was to explore differences in physicians' perceptions on the illness of SLE and SSc patients. Physicians from nine disciplines working at three hospitals in Belgium completed illness perception questionnaires for healthcare professionals based on four patient vignettes, i.e., two vignettes per disease (SLE-SSc). Statistical analysis was carried out by a k-means clustering technique for clustering physicians according to their illness perceptions. Fifty physicians, 62% men with a mean age of 42.8 years (SD 11.3) and mean working experience of 12.7 years (SD 11.6), participated. For each disease, three clusters of physicians with different scores in illness perceptions were identified. For SLE, these clusters were specified as the 'optimistic' group, the 'realistic' group, and the 'overwhelming impact by disease' group. For SSc, the clusters were characterized as the 'optimistic' group, the 'realistic' group, and the 'skeptical' group. We found divergent illness perceptions across physicians of the same and other disciplines. Our study yielded three clusters of physicians per disease with a large variability in illness perceptions. Further studies should focus on the factors that determine these differences and their consequences for patient care.

Development and preliminary evaluation of the validity and reliability of a revised illness perception questionnaire for healthcare professionals.

BACKGROUND: Diverging perceptions between individual patients with somatic diseases and their healthcare professionals might cause problems in communication and decision-making. To date, no measurement tool is available to compare the illness perceptions between these two groups. The Revised Illness Perception Questionnaire (IPQ-R) is a validated, widely used instrument in many patient populations with somatic conditions. The aim of this study was to adapt the IPQ-R to a healthcare professional's version (IPQ-R HP) and to perform a preliminary evaluation of its validity and reliability. METHODS: After adaptation of the IPQ-R HP, 17 doctors from 3 general hospitals and 9 head nurses from a university hospital evaluated the face and content validity of the IPQ-R HP. The results were quantified using the content validity index (CVI) and a modified kappa index (k*). For the reliability measurements a group of nurses from 4 nursing wards participated at 2 time points with an interval of 4 weeks. Internal consistency and test-retest reliability were calculated. RESULTS: Twenty-eight of the 38 items demonstrated excellent content validity and four items showed good content validity. Four items had a sufficient k* and two items had a low CVI. The average CVI of the 7 dimensions ranged from 0.66 to 0.89. The Cronbach's alpha scores for the seven dimensions, intraclass coefficients and effect size estimates were acceptable. CONCLUSIONS: This preliminary evaluation of the IPQ-R HP shows an acceptable to good validity and reliability. Further exploration of the psychometric properties of this questionnaire in a large cohort of healthcare professionals is warranted.

Polymyalgia Rheumatica (PMR) Special Interest Group at OMERACT 11: outcomes of importance for patients with PMR.

We worked toward developing a core outcome set for clinical research studies in polymyalgia rheumatica (PMR) by conducting (1) patient consultations using modified nominal group technique; (2) a systematic literature review of outcome measures in PMR; (3) a pilot observational study of patients presenting with untreated PMR, and further discussion with patient research partners; and (4) a qualitative focus group study of patients with PMR on the meaning of stiffness, using thematic analysis. (1) Consultations included 104 patients at 4 centers. Symptoms of PMR included pain, stiffness, fatigue, and sleep disturbance. Function, anxiety, and depression were also often mentioned. Participants expressed concerns about diagnostic delay, adverse effects of glucocorticoids, and fear of relapse. (2) In the systematic review, outcome measures previously used for PMR include pain visual analog scores (VAS), morning stiffness, blood markers, function, and quality of life; standardized effect sizes posttreatment were large. (3) Findings from the observational study indicated that asking about symptom severity at 7 AM, or "on waking," appeared more relevant to disease activity than asking about symptom severity "now" (which depended on the time of assessment). (4) Preliminary results were presented from the focus group qualitative study, encompassing broad themes of stiffness, pain, and the effect of PMR on patients' lives. It was concluded that further validation work is required before a core outcome set in PMR can be recommended. Nevertheless, the large standardized effect sizes suggest that pain VAS is likely to be satisfactory as a primary outcome measure for assessing response to initial therapy of PMR. Dissection of between-patient heterogeneity in the subsequent treatment course may require attention to comorbidity as a potential confounding factor.

The Belgian Systemic Sclerosis Cohort: correlations between disease severity scores, cutaneous subsets, and autoantibody profile.

OBJECTIVE: To report baseline and followup data on the first 438 patients with systemic sclerosis (SSc) included in the Belgian Systemic Sclerosis Cohort. METHODS: According to LeRoy and Medsger's classification, 73 patients with limited SSc (lSSc), 279 with limited cutaneous SSc (lcSSc), and 86 with diffuse cutaneous SSc (dcSSc) were included. History was collected and clinical examination, blood tests, and paraclinical investigations were repeated. The Disease Activity Score (DAS) and Disease Severity Score (DSS) of several organ systems were computed. An organ system was considered to demonstrate SSc if the corresponding DSS was ≥ 1. RESULTS: At baseline, patients with dcSSc had more general, joint/tendon, muscle, gastrointestinal, and kidney involvement. Mean DLCO was below normal in patients with lSSc, indicating unsuspected lung involvement. Patients with anti-Scl-70 had more vascular, skin, joint/tendon, and lung involvement. Patients with anti-RNA polymerase III had more skin and joint/tendon involvement compared to patients with anticentromere. Time to death was statistically shorter for patients with dcSSc. New-onset lung disease was the most common complication over time. No changes in DAS were observed. By contrast, the general and the skin DSS worsened in patients with lcSSc and lSSc, respectively. Fifteen percent of patients with lSSc shifted to lcSSc at Month 30, but neither serology nor capillaroscopy findings at baseline were helpful in identifying those at risk. CONCLUSION: Our data indicate that the DSS can be used to define organ involvement in SSc. Differences can be seen between subsets classified not only according to cutaneous subtypes but also to autoantibody profile.

The association of illness perceptions with physical and mental health in systemic sclerosis patients: an exploratory study.

OBJECTIVE: The aim of the present study was to evaluate the association between illness perceptions and the ability to cope with physical and mental health problems in a large cohort of systemic sclerosis (SSc) patients. METHODS: This was a cross-sectional study in 217 systemic sclerosis patients from the Belgian Systemic Sclerosis Cohort. Illness perception and coping were measured by the Revised Illness Perception Questionnaire and a coping questionnaire--the Coping Orientation of Problem Experience inventory (COPE). Physical and mental health-related quality of life was measured by the 36-item short-form health survey (SF-36), as were disease activity and several severity parameters. The relationship between illness perceptions and the ability to cope with physical/mental health problems was examined using multiple linear regression analysis. RESULTS: According to LeRoy's classification, 49 patients had limited SSc (lSSc), 129 had limited cutaneous SSc (lcSSc) and 39 had diffuse cutaneous SSc (dcSSc). Median disease duration was five years and the modified Rodnan skin score was 4. Good physical health was significantly associated with the lcSSc subtype and low disease activity (p < 0.01 and p < 0.05, respectively). The perception of 'serious consequences' and strong 'illness identity' correlated with poor physical health (p < 0.001). Good mental health was associated with low illness identity scores and low 'emotional response' scores (p < 0.001). Coping variables were less significantly correlated with physical and mental health compared with the illness perception items. CONCLUSION: Illness representations contribute more than classical disease characteristics to physical and mental health.

Validation of a manual ability questionnaire in patients with systemic sclerosis.

OBJECTIVE: To adapt and validate a manual ability questionnaire, the ABILHAND, developed through the Rasch methodology in patients with systemic sclerosis (SSc). METHODS: The original version of the ABILHAND, which includes 81 manual daily activities, was presented to 156 patients with SSc. They were asked to provide their perceived difficulty in performing each manual activity on a 3-level scale: impossible, difficult, or easy. Items were selected from well-established psychometric criteria. The patients were reassessed 1 month later to test the reproducibility. Concomitantly, they were clinically evaluated for their disease activity/severity, and their functional ability was tested with the Health Assessment Questionnaire (HAQ). RESULTS: The 26 selected items defined a unidimensional and linear measure of manual ability and showed a continuous progression in their difficulty. The item difficulty hierarchy was invariant across 12 patient-related factors and the manual ability score was reproducible over time. Finally, the manual ability was significantly poorer in SSc patients with more severe disease, and was negatively correlated with the HAQ score (rho = -0.733). CONCLUSION: The SSc-adapted ABILHAND questionnaire is a reliable, valid, reproducible, linear, and unidimensional measure to assess and followup on the manual ability of patients with SSc; therefore, it could become a useful additional tool in clinical trials to assess treatment efficacy.