Patient-Reported Outcomes in Multiple Sclerosis: An Overview

“Feed-Forward” PROMs

Oliver and colleagues¹⁶ have described “feed-forward” PROM applications in MS care in a community hospital setting using a learning health system approach. This MS clinic uses feed-forward PROs to inform clinical care—PRO data are gathered before the clinic visit and analyzed ahead of or during the clinic visit by the clinician. Patients are asked to arrive early and complete a questionnaire comprised of PROMs measuring disability, functioning, quality of life, cognitive ability, pain, fatigue, sleep quality, anxiety, and depression. Clinicians score the PROMs and input scores into the electronic health record before the clinical encounter. During the clinic visit, PROM data is visually displayed so that the clinician and patient can discuss results and use the data to better inform decision-making. The visual data display contains longitudinal information, displaying trends in health status across multiple domains, and includes specified thresholds for clinically active symptom levels (Figure).¹⁶ Longitudinal monitoring of PROM data allows for real-time assessment of goal-related progress throughout treatment. As illustrated previously by Marion’s case study, the use of real-time feed-forward PROM data can strengthen the partnership between patient and clinician as well as improve empowerment, engagement, self-monitoring, and adherence.

PRO Dashboards

Performance dashboards are increasingly used in health care to visually display clinical and PRO data for individual patients, systems, and populations over time. Dashboards display a parsimonious group of critically important measures to give clinicians and patients a longitudinal view of PRO status. They can inform decision-making in clinical care, operations, health care improvement efforts, and population health initiatives.⁵⁸ Effective dashboards allow for user customization with meaningful measures, knowledge discovery for analysis of health problems, accessibility of health information, clear visualization, alerts for unexpected data values, and system connectivity.^59,60 Appropriate development of PRO dashboards requires meaningful patient and clinician involvement via focus groups and key informant interviews, Delphi process approaches to prioritize and finalize selection of priority measures, iterative building of the interface with design input from key informants and stakeholders (co-design), and pilot testing to assess feasibility and acceptability of use.^61-63

Other Applications of PROs/PROMs in MS

Learning Health Systems

The National Quality Forum (NQF) and the Centers for Medicaid and Medicare Services have adopted PROs for use in quality measurement.^64-66 This includes a movement towards the use of LHS, defined as a health system in which information from patients and clinicians is systematically collected and synthesized with external evidence to inform clinical care, improvement, and research.^67-70 Often a LHS is undertaken as a collaborative effort between multiple health care centers to improve quality and outcomes of care.⁷⁰ The MS Continuous Quality Improvement Collaborative (MS-CQI), the first multi-center systems-level health care improvement research collaborative for MS,⁷¹ as well as IBD Qorus and the Cystic Fibrosis Care Center Network utilize LHS approaches.^72-77

IBD Qorus is a LHS developed by the Crohn’s and Colitis Foundation that uses performance dashboards to better inform clinical care for people with inflammatory bowel disease. It also employs system-level dashboards for performance benchmarking in quality improvement initiatives and aggregate-level dashboards to assess population health status.^78,79 MS-CQI uses a LHS approach to inform the improvement of MS care across multiple centers using a comprehensive dashboard, including PROMs, for benchmarking and to monitor system and population health status. MS-CQI collects PROMs using a secure online platform that can be accessed by persons with MS and their clinicians and also includes a journaling feature for collecting qualitative information and for reference and self-monitoring.⁷¹

MS Research

PROMs are used in clinical and epidemiological research to evaluate many aspects of MS, including the FAMS, the PDSS, the Fatigue Impact Scale (FIS), and others.^80-82 For example, the PROMIS FatigueMS and the Fatigue Performance Scale have been used to assess the impact of MS-related fatigue on social participation.⁸³ Generic and MS-specific PROMs have been used to assess pain levels for people with MS,^84-87 and multiple MS-specific PROMs, like PRIMUS and MSQoL-54,⁴³ as well as the SF-36³⁹ include pain assessment scales. PROMs have also been used to assess MS-related bladder, bowel, and sexual dysfunction. Urgency, frequency, and incontinence affect up to 75% of patients with MS,⁸⁸ and many PROMs, such as the LMSQoL, MUSIQoL, and the MSQoL-54, are able to evaluate bladder control and sexual functioning.^43,89