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Using patient reported outcomes (PROs) to improve quality of life for people with IBD

By Silvio Danese, Professor of Gastroenterology, Humanitas University, and Head of IBD Center Department of Gastroenterology, Istituto Clinico Humanitas, Italy

There are significant developments in the world of inflammatory bowel disease (IBD), which is moving to a patient-centric approach that means putting the needs of the patient first - “treat the patient, not the disease”.

Besides the well-known clinical efficacy that is a key goal when treating patients, patient reported outcomes (PROs) are a way to tailor treatment to patients’ needs and preferences. The European Medicines Agency (EMA) defines PROs as any outcome evaluated directly by patients themselves, and is based on the patient perception of a disease and its treatment.

PROs are a big umbrella and cover not only one dimension but multi-dimensional measures of symptoms, health-related quality of life, health status, adherence to treatment, and satisfaction with treatment.

PROs are essential, because patients’ and clinicians’ perspectives do not always correlate. Physicians commonly underestimate the impact of the disease on the patient. There are many factors to take into account, such as depression, anxiety, fatigue, sleep disturbance, and the impact on patients’ social lives. Other disease areas, such as cancer and rheumatoid arthritis, are much more advanced in the field of PROs and their importance in relation to treatment. PROs tools need to be valid, reliable, responsive and feasible. However, PROs in IBD are still at the embryonic stage.

Certainly, PROs are going to become an essential part of patient management for gastroenterologists in IBD, as patient perspectives will be key for treatment approaches. These developments will be incorporated in clinical guidelines. Validation of such PROs is key, in order to move forward in the field of IBD.

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IBD 13.03.2015

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