PEMS: Participatory evidence synthesis in multiple sclerosis and complementary therapies
2Institute for Complementary and Integrative Medicine, University Hospital Zurich and University of Zurich, Switzerland
3Swiss Multiple Sclerosis Registry, Epidemiology Biostatistics and Prevention Institute, Digital and Mobile Health Group, Institute for Implementation Science in Health Care, University of Zurich, Switzerland
4MS Care Consultation, Department of Neurology, University Hospital Zurich, Switzerland
5Center of Integrative Medicine, Cantonal Hospital of St. Gallen, Switzerland
6Rehabilitation Clinic Zihlschlacht, Zihlschlacht, Switzerland
7Medical Library, Hospital Universitario Ramón y Cajal, IRYCIS, Spain
Background: People with multiple sclerosis (pwMS) frequently use complementary therapies, e.g., food supplements or acupuncture. Some complementary therapies can help, but others may be ineffective or expensive. Moreover, the internet can provide unreliable and unsafe advice. There is a need to identify reliable evidence of the effects of complementary therapies on relevant outcomes for pwMS.
PEMS (Participatory evidence synthesis in multiple sclerosis and complementary therapies) is a 2-year research project led by the Institute for Complementary and Integrative Medicine (University Hospital Zurich) in collaboration with the Swiss Multiple Sclerosis Registry. The Swiss Multiple Sclerosis Society funded the project. PEMS aims to engage relevant stakeholders to collect the best available research evidence of complementary therapies on relevant outcomes for pwMS.
Objectives: O1) Identify priorities of pwMS in Switzerland for complementary therapies. O2) Develop a core outcome set (COS) for studies of complementary therapies in MS. O3) Develop an Evidence and Gap Map (EGM) with relevant evidence of complementary therapies on relevant outcomes for pwMS.
Methods: Multi-phase participatory research project involving pwMS, health professionals and researchers. O1) Survey nested within the Swiss Multiple Sclerosis Registry to identify the complementary therapies used by pwMS, reasons and symptoms for using them and expectations on their benefits/harms. O2) COS: International Delphi survey and consensus workshops. A scoping review of complementary therapies for pwMS will inform the initial outcomes list considered in the Delphi. O3) EGM developed with Eppi-Reviewer to collect systematic reviews and randomised trials identified in the scoping review.
Results: About 730 pwMS in Switzerland have completed the survey. The preliminary scoping review searches generated 16,949 unique reports, of which 329 are studies potentially eligible for the EGM. A list of potentially eligible complementary therapies and outcomes has been generated.
Conclusions: PEMS can help to identify reliable evidence of the effects of complementary therapies on outcomes that are relevant for pwMS and their families, health professionals and researchers. Patient or healthcare consumer involvement: PEMS participatory approach to engaging non-academic and academic partners in evidence synthesis will enhance the actual and perceived usefulness of the project results.