Need for the guidelineDespite some improvement in survival data over the last 40 years (2;13), lupus patients still die on average 25 years earlier than the mean for women and men in the UK ( 16). The disease can present with slowly or rapidly progressive active disease at any age and can be associated with the rapid accumulation of damage if not promptly diagnosed, appropriately treated and regularly monitored (2;8;14;19;20). An up to date comprehensive guideline to optimise these aspects of management and consistent with current evidence and NHS practice, is warranted to improve the outcome of this variable and potentially life-threatening disease that causes considerable morbidity. There have been no previous UK based guidelines for lupus. The European (EULAR) recommendations for the management of lupus in general were not very detailed and were published in 2008( 22) although more specific recommendations were published for neuro-psychiatric lupus in 2010( 23) and joint European League Against Rheumatism and European Renal Association-European Dialysis and Transplant Association (EULAR/ ERA-EDTA) recommendations for lupus nephritis were published in 2012( 24), as well as American College of Rheumatology (ACR) guidelines for the management of lupus nephritis in 2012(25). Objectives of the guidelineThe aim of this guideline was to produce recommendations for the management of adult lupus patients in the UK that cover the diagnosis, assessment, and monitoring of lupus and the treatment of mild, moderate and severe active lupus disease but that do not imply a legal obligation. The resulting recommendations are based on an extensive literature review up to June 2015 to produce evidence-based guidelines, particularly for the treatment of non-renal lupus, supplemented as necessary by expert opinion and consensus agreement (tables 1 and 2). The guideline development group recommend that patients with lupus nephritis are managed according to the EULAR/ERA-EDTA recommendations for lupus nephritis(24) and provide their levels of agreement with a summary of the most important items in those recommendations (table 3). Target population, target audience and stakeholder involvementThe guidelines address the management of adult patients only and have been developed by a multidisciplinary guideline development group set up by the BSR and led by CG, consisting of academic (CG, INB, DDC, MK, DI) and NHS consultants in rheumatology (MA, BG) and nephrology (DJ, LL), rheumatology trainees (MG, KS), a GP (BE) and a clinical nurse specialist (SB), a patient representative (YN) and a lay member (PN). All participants declared any conflicts of interest and these are listed at the end of this article. The target audience includes rheumatologists and other clinicians such as nephrologists, immunologists and dermatologists, trainees in these specialties and emergency medicine, GPs, clinical nurse specialists, and other allied health professionals involved in the care of adult lupus patients. Opinions of BSR SLE Full guideline final with...

Abstract:The prognosis for patients with systemic lupus erythematosus (SLE) has improved significantly, with 20-year survival now approximately 80% owing partly to effective treatment. SLE treatment has evolved from the use of conventional drugs such as hydroxychloroquine and corticosteroids, nonspecific immunosuppressants including mycophenolate mofetil, to targeting selective components of the immune cascade with a view to increased efficacy, tolerability and safety profile. These novel treatments include B-cell-depleting antibodies and fusion proteins that block the costimulatory pathways of B and T cells. A discussion of these pharmacological options and ongoing research forms the basis of this review.

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Background Kidney transplantation is the preferred treatment for patients with end stage renal disease. However, it is largely unavailable in many sub-Sahara African countries including Ghana. In Ghana, treatment for end stage renal disease including transplantation, is usually financed out-of-pocket. As efforts continue to be made to expand the kidney transplantation programme in Ghana, it remains unclear whether patients with Chronic Kidney Disease (CKD) would be willing to pay for a kidney transplant. Aim The aim of the study was to assess CKD patients’ willingness to pay for kidney transplantation as a treatment option for end stage renal disease in Ghana. Methods A facility based cross-sectional study conducted at the Renal Outpatient clinic and Dialysis Unit of Korle-Bu Teaching Hospital among 342 CKD patients 18 years and above including those receiving haemodialysis. A consecutive sampling approach was used to recruit patients. Structured questionnaires were administered to obtain information on demographic, socio-economic, knowledge about transplant, perception of transplantation and willingness to pay for transplant. In addition, the INSPIRIT questionnaire was used to assess patients’ level of religiosity and spirituality. Contingent valuation method (CVM) method was used to assess willingness to pay (WTP) for kidney transplantation. Logistic regression model was used to determine the significant predictors of WTP. Results The average age of respondents was 50.2 ± 17.1 years with most (56.7% (194/342) being male. Overall, 90 out of the 342 study participants (26.3%, 95%CI: 21.7–31.3%) were willing to pay for a kidney transplant at the current going price (≥ $ 17,550) or more. The median amount participants were willing to pay below the current price was $986 (IQR: $197 –$1972). Among those willing to accept (67.3%, 230/342), 29.1% (67/230) were willing to pay for kidney transplant at the prevailing price. Wealth quintile, social support in terms of number of family friends one could talk to about personal issues and number of family members one can call on for help were the only factors identified to be significantly predictive of willingness to pay (p-value < 0.05). Conclusion The overall willingness to pay for kidney transplant is low among chronic kidney disease patients attending Korle-Bu Teaching Hospital. Patients with higher socio-economic status and those with more family members one can call on for help were more likely to pay for kidney transplantation. The study’s findings give policy makers an understanding of CKD patients circumstances regarding affordability of the medical management of CKD including kidney transplantation. This can help develop pricing models to attain an ideal poise between a cost effective but sustainable kidney transplant programme and improve patient access to this ultimate treatment option.