Development of an international, multidisciplinary, patient-centered Standard Outcome Set for Multiple Sclerosis: The S.O.S.MS project

Daniels K., Frequin S., van de Garde E., Biesma D., van der Wees P., van der Nat P., ...Daha Fazla

Multiple Sclerosis and Related Disorders, cilt.69, 2023 (SCI-Expanded) identifier identifier

  • Yayın Türü: Makale / Tam Makale
  • Cilt numarası: 69
  • Basım Tarihi: 2023
  • Doi Numarası: 10.1016/j.msard.2022.104461
  • Dergi Adı: Multiple Sclerosis and Related Disorders
  • Derginin Tarandığı İndeksler: Science Citation Index Expanded (SCI-EXPANDED), Scopus, MEDLINE
  • Anahtar Kelimeler: Benchmark, Core outcomes, Multiple sclerosis, Outcome indicator, Outcome set, Patient-reported outcomes, PROM, Value-based healthcare
  • Marmara Üniversitesi Adresli: Evet

Özet

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.