Review: Patient-reported outcomes in multiple sclerosis care

• Published in: Multiple sclerosis and related disorders 2019-08, Vol.33, p.61-66
• Main Authors: D'Amico, Emanuele, Haase, Rocco, Ziemssen, Tjalf
• Format: Article
• Language: English
• Subjects: Humans; Multiple Sclerosis; Patient Reported Outcome Measures; Patient-Centered Care
• ISSN: 2211-0348; 2211-0356
• DOI: 10.1016/j.msard.2019.05.019

•Critical reflection of the use of patient-reported outcomes (PRO) in MS care.•Guidance on the choice of tools for routine care in MS.•Promotion of standardized eHealth assessment of PROs in MS care.•Future developments in the covered area. Patient-reported outcomes (PROs) are increasingly used in multiple sclerosis (MS) research and clinical practice for understanding the effects that the disease and its treatments have on patients’ lives. PROs are captured directly from patients and include symptoms, function, health status, and health-related quality of life. No universal guidance on appropriateness of each applied tool exists. However, collecting clear and comprehensive outcome measures represents the first step of patient centered therapeutic management. The importance of PRO assessment is expected to continue to grow in the future. But in current MS reality, PROs are selected and used without a clear justification, and only few PROs are of adequate psychometric quality. There is a clear need for the development of high-quality; MS-specific PROs that assess the true concerns of patients and that evaluate the impact of both clinical and non-clinical interventions on a variety of outcomes. In this perspective review, we describe the importance of and methods for using PRO in MS by defining and identifying the used PROs in MS. Moreover, we will outline the challenges and key unanswered questions for routine use of PROs in MS discussing potential interventions to accelerate the integration of PROs in the clinical management of MS.