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Patient-Reported Outcomes Gain Attention at ECTRIMS 2019

Mary Caffrey
Sessions and posters from the 35th Congress of the European Committee for Treatment and Research in Multiple Sclerosis discussed various ways to measure patient-reported outcomes in multiple sclerosis.
Patient-reported outcomes (PROs), said Paul Matthews, MD, DPhil, FRCP, of Imperial College, London, are “ultimately the filter through which all this biology and pharmacology acts.” His comment about the importance of hearing from those living with multiple sclerosis (MS) occurred at ECTRIMS 2019, the 35th Congress of the European Committee for Treatment and Research in Multiple Sclerosis, which took place September 11-13, 2019, in Stockholm, Sweden.

Matthews’ presentation on PROs, which was part of a satellite symposium on novel measures monitoring MS that are becoming more important in clinical practice, was just one of many presentations, posters, and educational sessions during ECTRIMS 2019 that examined both the necessity, challenges, and results of incorporating this data into measurement of progress in treating MS.

PROs, Matthews said, are “better at capturing the voice of the person with MS,” especially as cognition assessments become more important as measures of disability progression. Oncology, he said, has offered a path for measuring “how patients feel and function,” as well as examples of how PROs directly relate to “hard” clinical outcomes.

He discussed the benefits and downsides of the Multiple Sclerosis Impact Scale (MSIS-29), which has 20 items related to physical status and 9 concerning psychological status. The score can be converted into a score of 0 to 100.

Digital tools provide opportunities for capturing PROs easily, with an iPhone or a Fitbit. Matthews pointed to examples such as the PatientsLikeMe website, which offers patients with dozens of conditions to share data online and connect with others like themselves.

But PROs are still a work in progress he said. Measures are still being constructed and validated. More work is being done to (1) address new populations or aspects of health, (2) improve clinical meaningfulness, (3) enhance convenience and patient compliance, and (4) improvement measurement properties.

Allessandra Solari, MD, of Fondazione IRCCS Istituto Neurologico C. Besta, Milan, Italy, said during an educational session that implementing PROs can bring certain challenges, including the administration burden and the concern on the part of patients that there is no obvious purpose to being asked questions. For physicians and researchers, the subjective nature of questions can be a barrier, along with the ability to have data at the point of care, and to interpret it. Finally, data security can be an issue.

But Solari was among the researchers at ECTRIMS 2019 working to validate PROs for use in clinical, epidemiological, and quality of care studies, and several were presented during the meeting.

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