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Patient Reported Outcomes ( PRO)s are becoming increasingly important for patient care.
PROs are defined as data that is related to a disease state that comes directly from the patient without interpretation from a clinician or anyone else.
This kind of data is especially important for a chronic illness and even more so for an illness like multiple sclerosis which can have fluctuating symptoms with "good days" and "bad days." If we are able to capture this data at several points in time it would allow one assess the normal day to day life of a patient and would provide a more complete picture, rather than what one is able to obtain with an examination in a doctors office at specfic intervals in time. This would also help overcome any difficulty a patient might have recollecting symptoms accurately over the preceding several weeks or months between visits as the data would have been entered in real time.
MS can cause a multitude of symptoms and affect several domains including gait, strength, coordination, fatigue, cognition, so a set of PROs that would assess these multiple aspects would be essential. In order for such a tool to be meaningful, it would need to assess symptoms, Quality of life and level of fuctioning.
At the present time, PROs are mainly used in clinical trials in MS, and not in any significant manner in clinical practice.Before a more widespread use, it would need to be accurate, reliable, easy for patients to report and for the clinician to interpret.
There are ongoing studies that compare the neurological exam reported by patients to the clinical exam during visits so one can establish the accuracy of the data entered by patients and also looking at the best self-administered tests on mobile applications or tablets.
We hope with the completion of these studies including one such study testiing the BeCare application at the Weill Cornell MS center, we will be able to incorporate this important measure in to enhance patient care.
Jai S Perurmal, MD