Abstract
BACKGROUND: Currently, outcomes of Multiple Sclerosis (MS) are not standardized and it is unclear which outcomes matter most to people living with MS. A consensus between patients and healthcare professionals on which outcomes to measure and how, would facilitate a move towards value-based MS care.
OBJECTIVE: to develop an internationally accepted, patient-relevant Standard Outcome Set for MS (S.O.S.MS).
METHODS: A mixed-method design was used, including a systematic literature review, four patient focus groups (n=30) and a RAND-modified Delphi process with seventeen MS experts of five disciplines from seven countries (the Netherlands, United States of America, Portugal, Ireland, India, New Zealand, Switzerland and Turkey).
RESULTS: A standard outcome set for MS was defined, consisting of fourteen outcomes divided in four domains: disease activity (n=3), symptoms (n=4), functional status (n=6), and quality of life (n=1). For each outcome, an outcome measure was selected and the measurement protocol was defined. In addition, seven case-mix variables were selected.
CONCLUSION: This standard outcome set provides a guideline for measuring outcomes of MS in clinical practice and research. Using this set to monitor and (inter)nationally benchmark real-world outcomes of MS can support improvement of patient value and ultimately guide the transition towards value-based MS care.
Original language | English |
---|---|
Article number | 104461 |
Pages (from-to) | 1-7 |
Number of pages | 7 |
Journal | Multiple Sclerosis and Related Disorders |
Volume | 69 |
DOIs | |
Publication status | Published - 15 Dec 2022 |
Bibliographical note
Copyright © 2022 The Author(s). Published by Elsevier B.V. All rights reserved.Keywords
- Outcome set
- Core outcomes
- Value-based healthcare
- Benchmark
- Outcome indicator
- Patient-reported outcomes
- PROM
- Multiple sclerosis