Integrating Patient Reported Outcomes, clinical data and quality indicators to physician driven data in clinical management of chronic rheumatic diseases: the paradigm of Systemic Lupus Erythematosus (SLE)

A discordance exists between patients and physicians in the assessment of Systemic Lupus Erythematosus (SLE). A more patient-oriented research to address the multifaceted dimensions of the disease burden is warranted. The aim of this study was to investigate patients’ needs and expectations about their medical care, with the objective of integrating patient-reported data to the traditional physician evaluation towards a new shared strategy for the monitoring of SLE. The first step of the project was a systematic literature review of existing clinical and non-clinical indicators for the management of SLE and of currently available SLE-dedicated IT tools (Apps) designed to involve the patient in the gathering of clinical and quality of life data about their health. On the basis of the results of the literature review, ad-hoc on-line surveys have been designed, targeting European experts in the field and SLE patients. The aim was to investigate both the real use of such indicators in clinical practice and to identify needs and expectations experienced by doctors and patients in management of the disease. Finally, the survey results have been discussed in dedicated focus groups of patients, clinicians but also general practitioners, nurses and one caregiver. According to the project results, the key elements for the development of a new paradigm for SLE management should include: • MULTIDISCIPLINARITY and NETWORKING • PATIENT-PHYSICIAN COMMUNICATION • PATIENT’S EDUCATION • PATIENT’S EMPOWERMENT First of all, the ideal setting for the management of the disease seems to be represented by a dedicated “Lupus clinic”, where the patient can be in charge of a team of expert health care professionals. The networking with multi-disciplinary specialists should be encouraged. From both the patients’ and clinicians’ perspective emerged that the communication between the parts is often inadequate in terms of both contents and means. SLE patients declared that they have a real, shared hunger for information about the disease and, on the other hand, clinicians think that only an educated patient can be really empowered. Some instruments may be of help to make such an educational process to happen. Both clinicians and patients agreed on the fact that an ideal IT solution would be of benefit in the management of the disease. Self-management of simple tasks is important as one of the first steps towards patient’s engagement and empowerment. In conclusion, several unmet needs seem to be present in the management of SLE, both from the patient’s and the clinician’s point of view. In this setting, the results of the project pointed out a path to follow in the management of Lupus patients and lay the foundations for a new shared strategy for disease management in clinical practice which may serve as a prototype for other chronic diseases