Therapeutic Research

Abstract

Objective：To understand the patient journey and unmet medical needs of patients with systemic/cutaneous lupus erythematosus（SLE/CLE）in Japan. 　　Methods：Qualitative data were collected through semi‒structured, 45‒minute telephone interviews from Japanese patients with SLE/CLE（n＝10/n＝5）and medical specialists（dermatologists, nephrologists, rheumatologists）primarily responsible for SLE/CLE patient care. Interviewees were asked for their views and experience with regard to current care. 　　Findings：Only 3/15 patients suspected SLE/CLE and often delayed consultation of physicians. Three patients（1 SLE；2 CLE）presented directly to the diagnosing specialist, while 12 patients were referred from other departments, not being presented directly to specialists. Among the SLE/CLE patients, the time from the appearance of first symptoms to diagnosis ranged from 1 month to 18 years（mean 2.7 years）and from 2 months to 17 years（mean 3.7 years）, respectively. Oral and/or topical steroids were base medicines for both SLE and CLE patients. Immunosuppressants were used in 60％ and 0％ of SLE/CLE patients, and hydroxychloroquine in 30％ and 60％ of SLE/CLE patients, respectively. Key unmet needs highlighted by the specialists and patients were a lack of awareness about SLE/CLE, limited methods for early diagnosis, a lack of alternative to steroids and treatment effective for chronic symptoms, lack of tools/support aimed at improving education and patient quality of life. 　　Conclusions：In our sample, the mean time from the appearance of the first symptoms to diagnosis according to the SLE and CLE patients was 2.7 and 3.7 years, respectively. Improvements in awareness of SLE/CLE and the provision of accurate information and educational programs/materials for patients and non‒specialists are needed.