OBJECTIVES

: Systemic Lupus Erythematosus (SLE) is a chronic inflammatory disease characterized by multi-organ involvement and a complex clinical picture.The aim of the present study is to evaluate knowledge, needs and expectations among SLE patients to highlight patients’ perspectives to bridge the gap in information and communication between patients and clinicians.

METHODS

: A web survey was designed for SLE patients invited by LUPUS EUROPE and clinicians involved in the INTEGRATE Pilot Project. To deepen the results of the survey we organized two focus groups involving 15 patients from 12 European countries.

RESULTS

: Overall 554 SLE patients from European countries (28.7% of the responders were mainly from Italy and 30.9% from UK) participated to the survey. The mean age was 44.3±13.1 years and 94.2% of patients were female. Data from the survey suggested that about 50% of the patients had good to very good knowledge of disease related issues. 74.2% of patients reported high to extreme need related to the involvement in decisions about treatment and disease management, 77.3% declared moderate to extreme need in improvement of participation in social activities, 64.8% reported high to extreme need in maintaining relationship with friends. The focus groups showed that many patients were not adequately informed about treatment, side effects and lifestyle choices. Problems of communication with loved ones, close friends, the wider community and in some cases specialists and GPs have been reported.Patients highlighted the need to receive more “understandable” and personalized information, even suggesting the possible role of a specialized nurse in providing practical support and assistance.

CONCLUSIONS

: Survey and focus groups suggested specific areas of unmet needs and also provided ideas in relation to the practical strategies. These results, combined with the assessment of clinicians’ perspectives, would help to design an integrated strategy for disease management.