Individuals living with lupus: findings from the LUPUS UK Members Survey 2014.

Systemic lupus erythematosus (SLE) is a complex and unpredictable disease which varies greatly among patients and has a significant impact on an individual's daily living and quality of life. A better understanding of the patients' experiences with the disease is vital to the effective management of the disease. LUPUS UK, a national UK-registered charity supporting people with systemic and discoid lupus, conducted a UK-wide survey of individuals living with lupus in order to provide foundation information to support and identify gaps needing further research. An anonymous survey was sent to 5660 LUPUS UK members in order to obtain demographic, diagnosis, symptom and treatment information. A total of 2527 surveys were returned by 2371 females (mean age 56.9 years, SD 13.6) and 156 males, (mean age 60.9 years, SD 15.7). Individuals reported a mean (SD) time to diagnosis from the first symptom of 6.4 (9.5) years, with 47% ( n = 1186) initially being given a different diagnosis prior to lupus. Fatigue/weakness (91%, n = 2299) and joint pain/swelling (77.4%, n = 1957) were the most common symptoms that interfere with daily activities, while 73% ( n = 1836) noted having some problems that make them unable to carry out their usual daily activities. Thirty-two per cent ( n = 806) were also seeking support beyond traditional pharmacological treatments, such as acupuncture and massage. This study highlights the range and frequency of symptoms difficult to live with on a daily basis and support areas needing further research to improve patients' well-being.

Factors associated with refractory renal disease in patients with systemic lupus erythematosus: the role of patient nonadherence.

OBJECTIVE: To assess the prevalence and underlying reasons for the development of chronic renal insufficiency (CRI) in patients with systemic lupus erythematosus (SLE) seen over a 3-year period in our lupus clinic, in particular to determine the frequency and types of patient-dependent factors that were associated with nonadherence when it occurred. METHODS: We determined the frequency and types of patient-dependent factors that were associated with the development of CRI in patients with SLE. CRI was defined as a serum creatinine level > or = 200 mumol/l for at least 6 months. RESULTS: Of the 462 patients followed at the lupus clinic between 1995 and 1998, 17 patients developed CRI. Patient-related factors were deemed to be the major reason for the development of CRI in 5 of these. Three of the 5 patients were nonwhite, and the 2 patients who were white were new immigrants. All 5 patients were reluctant to take high-dose corticosteroids because of potential adverse effects. Financial problems contributed to nonadherence in 2 cases. Two patients refused to continue steroids and immunosuppressive therapy and chose to use "alternative" medications as their sole therapy. Of these 5 patients, 3 are now on long-term renal replacement therapy, 1 has died, and 1 patient continues to be followed with a serum creatinine level of 250 mumol/l. CONCLUSION: There is a need for an educational program based on patients' cultural background in order to enhance patients' understanding of the aims, risks, and benefits of therapy in SLE.