Background/Purpose: Systemic Lupus Erythematosus (SLE) is a chronic inflammatory disease characterized by multi-organ involvement and a complex clinical picture, with a wide range of manifestations with and unpredictable relapsing and remitting course. Evidence suggests that discordance between patients and physicians could negatively affect patient care, adherence to treatment and outcomes of the disease. In particular, physicians’ and patients’ assessments of disease activity and health status in SLE are shown to differ considerably, suggesting the need to better understand patients’ perspective to bridge the gap in information and communication.

The aim of the present study is to assess knowledge, needs and expectations among SLE patients to shine a light on patients’ perspectives. The research was part of the INTEGRATE Pilot project assessing patients’ and clinicians’ perspectives to develop a strategy for the monitoring and treatment of chronic diseases aligning the integration of patient driven data with the traditional clinical evaluation.

Methods: A web survey was designed to assess knowledge, needs and expectations among SLE patients. LUPUS EUROPE and partner clinicians were invited patients to participate in the survey. Furthermore, two focus groups involving 15 patients from 12 European countries were then organized into two-hour sessions to delve deeper into survey’s results.

Results: Overall 554 SLE patients (mean age 44.3±13.1 years; 94.2% female) participated to the survey. Responders were mainly from Italy (28.7%) and UK (30.9%), but answers came from almost all European countries.

Data from the survey suggested that about 50% of the patients had good to very good knowledge of disease related issues. The main needs highlighted from responders were related to the involvement in decisions about treatment and disease management (74.2% reported high to extreme need), improvement of participation in social activities (77.3% declared moderate to extreme need) and maintenance of relationship with friends (64.8% reported high to extreme need). During the focus groups many patients reported that they were not adequately informed about treatment, side effects and lifestyle choices. All patients reported problems of communication about their disease with others including loved ones, friends, the wider community and in some cases specialists and GPs. There was a particular emphasis on improving their relationship with their specialists and other healthcare professionals. Patients highlighted the need to receive more “understandable” and personalized information, even suggesting the possible role of a specialized nurse in providing practical support.

Conclusion: Patients inputs collected from both the survey and focus groups suggested specific areas of unmet needs and also provided ideas in relation to the practical strategies to adopt in order to fill existing gaps. These results, combined with the assessment of clinicians’ perspectives, could serve to design an integrated strategy for disease management.

Acknowledgement: This project received funding from the European Commission under the 3rd Health Programme, GA:PP-2-4-2016. We wish to thank Andrew Shaw for his work in the focus groups.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/knowledge-needs-and-expectations-among-systemic-lupus-erythematosus-preliminary-results-from-the-integrate-pilot-project/