16 research outputs found
Interrelationships between heath utility measurements, disease activity and psychological factors in Behçet's disease
No full textObjective: To measure the health utilities Time Trade-Off (TTO) and Standard Gamble (SG), that ask to consider sacrifices in terms of length of life (TTO) or risk of death (SG) for improvements in quality of life in Behcet's disease (BD), and explore the interrelationships with disease activity, depression, anxiety and fatigue. Method: TTO, SG, EQ-5D-5L, EQ VAS, depression (PHQ-9), anxiety (GAD-7) and fatigue (MAF) questionnaires were administered to 103 adult BD patients. Disease activity was assessed using the Behçet's Disease Activity Index (BDAI). Results: Mean TTO was 0.72 ± SD 0.27 and mean SG 0.70 ± SD 0.34. Moderate/severe depression was identified in 55.2%, moderate/severe anxiety in 35.1% and moderate/high fatigue in 97.7% patients. TTO negatively correlated with depression (p < 0.01), anxiety (p < 0.01) and fatigue (p < 0.01) but did not correlate with BDAI. Cluster analysis revealed one cluster where psychological factors rather than disease activity may have influenced TTO and SG scores. Conclusions: TTO and SG show that BD patients would on average forgo 28% of their remaining life or run a 30% risk of death to avoid the condition. Complex interrelationships with depression, anxiety and fatigue may be more influential than disease activity in treatment decision making.</p
Communication with patients of South Asian origin:problems and solutions in the context of rheumatoid arthritis
No full textRheumatoid arthritis is a common chronic disease associated with significant morbidity and mortality. As with all chronic conditions, active participation by the patient, in areas ranging from accepting the diagnosis and its treatment to the implementation of coping strategies, is essential for effective management. Involving any patients in these process can be difficult; however patients of South Asian origin can present particular challenges. Many patients of South Asian origin have beliefs about disease causation and the utility of pharmacological and non‐pharmacological treatments that differ from those held by other patients. Communication difficulties can make it difficult for health care professionals to address these issues. We discuss strategies to support patients and encourage their involvement including linguistically appropriate educational material, peer support and telephone helplines
The Behçet's centres of excellence: A new paradigm for care delivery in complex diseases
No full textGenetics of Behçet's disease
No full textPURPOSE OF REVIEW: This article discusses recent genetic and epigenetic associations involved in the pathogenesis of Behçet's disease.RECENT FINDINGS: Genetic studies have supported the strong association of human leukocyte antigen-B and Behçet's disease, and high production of tumour necrosis factor and low production of interleukin (IL)-10, which have led to therapy based on controlling these effects. Polymorphisms that affect the response to pathogens (TLR and FUT2) are leading to increased interest in responses to microbiomes. Inflammation in Behçet's disease results in vascular damage and several single nucleotide polymorphisms in chemokine and adhesion molecules may be involved in this process. Increased levels of inflammatory cytokines including IL-1β and IL-17 have been linked to altered expression of microRNAs, miR155, miR21 and miR23b. DNA methylation changes in monocytes and lymphocytes have been described that affect the function of these cells.SUMMARY: Genetic and epigenetic changes affecting cells and molecules involved in Behçet's disease offer new pathways for research, including cytoskeletal protein function, that will provide new targets for therapy, and potentially address the ethnic differences seen in validation of gene studies.</p
Recurrent endobronchial occlusion and aorto-bronchial fistula formation in Behcet’s disease
No full textAbstract Background Behcet’s disease is a multi-system inflammatory disorder. A small subset of patients with Behcet’s develop relapsing polychondritis which is classified as a separate disease known as Mouth and Genital ulcers with inflamed cartilage (MAGIC syndrome). It has previously been observed that this condition can also affect the cartilaginous tissue in the tracheobronchial tree. Case presentation We present the case of a 44-year-old lady with Behcet’s Disease, Mouth and Genital ulcers with inflamed cartilage (MAGIC) syndrome and an aortic Frozen Elephant Trunk (FET) who presented to hospital with recurrent episodes of left lobar collapse of the lung. During bronchoscopy, we found the presence of multiple inflammatory endobronchial webs occluding segments of the left bronchial tree. Repeated examinations showed evidence that these inflammatory webs were progressing in size, density and location. Furthermore, we noticed herniation of her descending aortic FET into her left bronchial tree forming an aorto-bronchial fistula which was complicated by a graft infection. Her descending aortic FET section was surgically replaced with an open procedure and bronchoscopic interventions attempted to remove the occlusions in her bronchial tree. Despite optimisation of medical management and surgical correction, this patient continued to develop progressive occlusion of her left bronchial tree, resulting in a chronically collapsed left lung. Conclusions A multi-disciplinary team approach is of paramount importance in order to optimally manage patients with Behcet’s disease, balancing immunosuppressive regimens that need close monitoring and titration in the context of potential surgical intervention and the risk for intercurrent infection
Analysis of Fcγ receptor haplotypes in rheumatoid arthritis: FCGR3A remains a major susceptibility gene at this locus, with an additional contribution from FCGR3B
No full textThe Fcγ receptors play important roles in the initiation and regulation of many immunological and inflammatory processes, and genetic variants (FCGR) have been associated with numerous autoimmune and infectious diseases. The data in rheumatoid arthritis (RA) are conflicting and we previously demonstrated an association between FCGR3A and RA. In view of the close molecular proximity with FCGR2A, FCGR2B and FCGR3B, additional polymorphisms within these genes and FCGR haplotypes were examined to refine the extent of association with RA. Biallelic polymorphisms in FCGR2A, FCGR2B and FCGR3B were examined for association with RA in two well characterized UK Caucasian and North Indian/Pakistani cohorts, in which FCGR3A genotyping had previously been undertaken. Haplotype frequencies and linkage disequilibrium were estimated across the FCGR locus and a model-free analysis was performed to determine association with RA. This was followed by regression analysis, allowing for phase uncertainty, to identify the particular haplotype(s) that influences disease risk. Our results reveal that FCGR2A, FCGR2B and FCGR3B were not associated with RA. The haplotype with the strongest association with RA susceptibility was the FCGR3A–FCGR3B 158V-NA2 haplotype (odds ratio 3.18, 95% confidence interval 1.13–8.92 [P = 0.03] for homozygotes compared with all genotypes). The association was stronger in the presence of nodules (odds ratio 5.03, 95% confidence interval 1.44–17.56; P = 0.01). This haplotype was also more common in North Indian/Pakistani RA patients than in control individuals, but not significantly so. Logistic regression analyses suggested that FCGR3A remained the most significant gene at this locus. The increased association with an FCGR3A–FCGR3B haplotype suggests that other polymorphic variants within FCGR3A or FCGR3B, or in linkage disequilibrium with this haplotype, may additionally contribute to disease pathogenesis
Breaking communication barriers for RA patients of South Asian origin: the use of a bilingual educational audio CD and linguistically appropriate peer support and education.
No full textBACKGROUND: People from the Indian subcontinent represent one of the largest ethnic groups in the UK. Patient education resources are required to address language barriers, poor literacy and (potentially discordant) cultural beliefs. We have investigated a novel strategy to meet this need. METHODS: Rheumatoid arthritis (RA) patients of South Asian origin who prefer to communicate in a South Asian language were invited to a face-to-face interaction with a trained patient volunteer to provide linguistically appropriate peer support and education, and given a bilingual educational audio CD. Qualitative methods were used to assess this approach; three focus groups were held and 15 patients participated in total. RESULTS: Four important themes were identified: (1) The need for information about RA; all patients agreed that this was vital to learn how to live with their chronic disease. (2) Currently available approaches to education; particular concerns related to a lack of time in clinic, language barriers, difficulties in communicating via interpreters and that most written information was available only in English. (3) Support provided by a trained patient volunteer; patients appreciated that they were listened to, and were motivated by the volunteers' positive attitude. (4) The usefulness of the audio CD; patients appreciated that information was presented in a language they could understand, via a convenient medium and which offered a helpful perspective on their illness. CONCLUSIONS: This approach is a successful way of delivering information and encouraged patients from a difficult-to-reach community to become more involved in their disease management
Birmingham SLE cohort: outcomes of a large inception cohort followed for up to 21 years.
No full textOBJECTIVE: The aim of this study was to describe the outcomes and predictors for development of damage in a large inception cohort of SLE patients. METHODS: This was a prospective longitudinal study of a cohort of SLE patients. SLE patients were included if they were recruited within 3 years of achieving the fourth ACR criterion for SLE. Data were collected on disease activity, damage and treatment. Information on death was provided by the Office for National Statistics. The censoring date for analysis was 31 December 2010. A standardized mortality ratio was calculated. Poisson regression was used to determine the incidence rate for damage accrual. Multistate Markov modelling was used to determine predictors for development of damage. RESULTS: There were 382 patients (92.4% females, 51.6% Caucasian, 22% South Asian, 20.7% Afro-Caribbean) with 12 072 assessments and total follow-up of 2958 patient-years. There were 300 items of damage (in 143 patients) and 37 deaths. The overall standardized mortality ratio was 2.0 (95% CI 1.5, 2.8) and the most common causes of death were infection (37.8%), cardiovascular (27%) and malignancy (13.5%). The predictors for damage accrual were higher prior damage, older age at diagnosis, active disease, systemic corticosteroid exposure and CYC exposure. Patients were more likely to develop new damage earlier in their disease than later. Ethnicity was not predictive of damage accrual or death in this cohort. CONCLUSION: SLE patients have premature mortality. Active disease, corticosteroid exposure and CYC exposure were independently associated with the development of damage. Damage accrual is more likely to occur in early disease
