Patient experiences with systematically-administered patient-reported outcome measures in multiple sclerosis

There have been limited studies on the views of persons with MS (PwMS) around the systematic use of Patient Reported Outcome Measures (PROMs). The objective of this study was to explore the perspectives of PwMS on the integration of PROMs into clinical practice as part of a randomized trial.

We conducted a qualitative substudy of our previous randomized controlled trial (RCT)(Clinicaltrials.gov NCT0497954), which was conducted from November 2021 to April 2024 and evaluated the effect of the systematic use of PROMs on depression and anxiety in PwMS. In this sub-study that ran from May 6, 2025 to August 31, 2025, we used purposive sampling of the participants from our RCT and conducted virtual semi-structured interviews. Thematic analysis of the interview transcripts was performed by two researchers independently using an inductive approach to create codes, categories, and abstract themes.

33 PwMS participated in semi-structured interviews that ranged from 10 to 40 minutes. Three main themes emerged to describe the perspectives of PwMS on the use of PROMs within their treatment: (i) Patient empowerment; (ii) Reassurance that their provider had reviewed their results; (iii) Individualized PROMs. Additionally, PwMS described challenges to incorporating PROMs, the perceived impact of PROMs on their care, and facilitating factors of PROMs.

PROMs within this clinical setting were accepted by patients and created opportunities for patient empowerment. Some improvements to the use of PROMs were suggested, such as the addition of open-ended questions, making sure the physicians are ready to review the PROMs, and individualizing the PROMs to better serve the patient's needs.