title: Burden of illness in systemic lupus erythematosus: results from a UK patient and carer online survey.
abstract: Objective The objective of this study was to assess the impact of systemic lupus erythematosus (SLE) on patients and carers. Methods Adults with SLE and carers of SLE patients completed a UK-specific online survey covering many aspects of the disease. Surveys were developed in collaboration with an NHS lupus unit and a lupus patient organization. Results A total of 121 patients and 31 carers completed the surveys. Of the 70% of patients initially misdiagnosed with another condition, 59% received treatment for the misdiagnosis. Fatigue was the most debilitating symptom, experienced daily by 79% of patients. The proportion of patients not reporting flares to healthcare providers varied with flare severity: mild flares (43%), moderate flares (15%) and severe flares (5%). Most patients (89%) reported reduced ability to socialize, and 76% had changed employment; of these, 52% stopped working completely. Over one-half (52%) of carers in paid employment missed time from work, and 55% of carers reported a worsened financial status. Most carers (87%) experienced interference with social activities. Conclusion SLE is commonly misdiagnosed and has a considerable impact on the physical, social and financial status of patients and carers. Increased awareness of the disease among healthcare providers and employers of patients and their carers is needed.
authors.affiliation: 1 Eli Lilly and Company, UK.
authors.forename: T
authors.initials: T
authors.lastname: Kent
authors.affiliation: 2 St Thomas' Lupus Trust, Guy's Hospital, UK.
authors.forename: A
authors.initials: A
authors.lastname: Davidson
authors.affiliation: 1 Eli Lilly and Company, UK.
authors.forename: D
authors.initials: D
authors.lastname: Newman
authors.affiliation: 1 Eli Lilly and Company, UK.|3 Cello Health Insight, UK.
authors.forename: G
authors.initials: G
authors.lastname: Buck
authors.affiliation: 4 Louise Coote Lupus Unit, Guy's and St Thomas' NHS Foundation Trust, UK.
authors.forename: D
authors.initials: D
authors.lastname: D'Cruz
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D017028:Caregivers / Q000706:statistics & numerical data*; D017281:Cost of Illness; D003430:Cross-Sectional Studies; D003951:Diagnostic Errors / Q000706:statistics & numerical data; D004651:Employment / Q000706:statistics & numerical data; D005221:Fatigue / Q000453:epidemiology* / Q000209:etiology; D005260:Female; D006801:Humans; D020407:Internet; D008180:Lupus Erythematosus, Systemic / Q000150:complications / Q000175:diagnosis / Q000503:physiopathology*; D008297:Male; D008875:Middle Aged; D011788:Quality of Life; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires; D006113:United Kingdom; D055815:Young Adult
keywords: Systemic lupus erythematosus and autoimmunity; attitude of health professionals; medical education; quality of life; social support