UNIPI Team Leader: Prof.ssa Marta Mosca, Dipartimento di Medicina Clinica e Sperimentale

Rheumatic diseases (RDs) are over 100 diseases, with tremendous impact on health and well-being. Among these, Systemic Lupus Erythematosus (SLE) is a disease affecting young women, with a prevalence in Europe around 40/100,000 inhabitants. Evaluation of SLE needs the assessment of different variables such as inflammatory activity, organ damage, comorbidities, drugs side effects and toxicity.

SLE significantly affects patient’s quality of life (QoL) and activities of daily living; however, disease activity and organ damage are not strongly associated with measures of QoL, suggesting that these measures assess different aspects of patient status. From one side, physicians may not be fully able to evaluate the effect of disease on their patients’ QoL; on the other side, patients may not be aware of clinically important signs of disease activity.

Important information from the patients' perspective and daily burden of disease may be overlooked by the treating physician. It is increasingly evident that patient-oriented research focusing on the dimensions of the disease burden could help in improving health outcomes.

General objective of the Project is to develop a strategy for the monitoring and treatment of SLE, as a paradigm of chronic rheumatic diseases, understanding the role and relying on the integration of quality indicators, PROMs and other patient driven data to the traditional physician evaluation. Through the collection and merging of feedbacks from different sources (reviews, surveys, etc), target groups (physicians, patients, nurses, other stakeholders) and a large sample of European countries (taking into account cultural and gender related issues), the Project designs strategies adaptable to different national contexts.

Results of this project will give strategic and operative indications to create a model - that benefits also from an innovative e-Health system - for the effective and sustainable management of RDs and other complex chronic diseases across EU.

Coordinator

UNIVERSITA DI PISA  (Italy)

Other Participants

• HEINRICH-HEINE-UNIVERSITAET DUESSELDORF (Germany)
• SCUOLA SUPERIORE DI STUDI UNIVERSITARI E DI PERFEZIONAMENTO SANT'ANNA (Italy)

Start Date 01/09/2017

End Date 31/08/2019

Project Cost € 827.619

Project Funding € 496.571

UNIPI Quota € 234.587

Call Title PP-2-2016

UNIPI Role Coordinator

Sito web https://www.integrate-sle.eu/