Patient perspectives on patient-reported outcomes in multiple sclerosis treatment trajectories: A qualitative study of why, what, and how?

Abstract

Background: Interest in patient-reported outcomes has been growing in multiple sclerosis research and clinical care in recent years. This situation reflects the need for developing, testing, and integrating measures that adequately capture patients’ perspectives on symptoms, functional capacity, health status, and health-related quality of life. However, the patient perspective on the relevance, content, and use of patient-reported outcomes is yet to be investigated. Hence, this study aims to investigate the perspectives of people with multiple sclerosis on the value of patient-reported outcomes in clinical encounters, the most important aspects of living with multiple sclerosis that should be reflected in these reports, and possible opportunities and barriers for integrating this data into clinical care.Methods: A qualitative study was conducted to capture patient perspectives in a Danish population of people with multiple sclerosis. Initially, two focus group interviews were conducted with a total of 11 participants to explore their perspectives on patient-reported outcomes and related prospects and barriers. Subsequently, nine individual interviews were conducted to further investigate the identified aspects, opportunities, and barriers to use patient-reported outcomes in clinical care and treatment.Results: In general, the informants were motivated to report patient-reported outcomes, and they believed these reports to be relevant in clinical encounters as well as to have potential to promote patient involvement by focusing on current challenges for others with this disease. However, differences in the perceived need for reporting patient-reported outcomes were detected regarding the stage in the multiple sclerosis care trajectory and in relation to the disease phenotypes. In terms of domains to be incorporated into patient-reported outcomes, a total of 28 were identified by the informants, including neurological symptoms, cognitive impairments, mental health and well-being, self-care activities, and social challenges. Several factors for integrating patient-reported outcomes into clinical care emerged as important, in particular related to timing and frequency of reporting patient reported outcomes, considerations of cognitive impairments, the need for individualized approaches to patient-reported outcomes, and the need for active use of these reports for adjustment of treatment approaches in clinical encounters.Conclusion: From the perspective of people with multiple sclerosis, patient-reported outcomes hold important potential for enhanced patient involvement leading to a more multifaceted agenda in clinical consultations. However, patient-reported outcomes need to be comprehensive and encompass a broad range of measures regarding neurological symptoms, cognitive impairments, mental health and well-being, self-care activities, and social challenges to adequately capture and support the needs of people with multiple sclerosis in clinical encounters. It is important to address barriers for integration of patient-reported outcomes into clinical care, with the aim of preventing misuse. Future studies should focus on the synergy between perspectives from both patients and clinicians to understand how integration of patient-reported outcomes in clinical care can succeed.