Multiple sclerosis (MS) is the most common neuroimmunological disease affecting young adults. The prevalence in Europe is estimated to be 127 in 100,000 with increasing tendency. As a “disease with many faces” MS can lead to diverse neuropsychological symptoms, motoric disability, mobility impairment, pain as well as bladder and sexual disorders. This results in loss of quality of life to individuals living with MS (IwMS), as this chronic disease is currently not curable, but progressive with a relapsing character. The early onset of MS and the relapsing character leave IwMS with the need to restructure and self-manage their lives anew post diagnose. 

An ongoing systematic review is being conducted of existing self-management programs (SMP) for IwMS, the underlying theoretical concepts or models of patient engagement and health literacy (HL). As HL is rarely analyzed as an outcome of SMPs, studies were included that somehow address HL in the context of self-management with MS. Primary studies published from January 1, 2011 to March 31, 2021 with comparing design (SMP vs. no SMP or professional- vs. patient-led SMP) were included. In essence, the search strings ‘“self management” OR “patient support” OR “patient education” OR “patient participation” OR “patient activation” OR “self care” OR “self help” AND “health literacy” AND “multiple sclerosis”’ were applied to several databases such as CENTRAL (Cochrane Central Register of Controlled Trials), MEDLINE, and Embase. Forward citation tracking and searches in individual relevant journals was conducted.

The review will structure the theoretical concepts or models of HL that were applied in the context of self-management in IwMS. The results serve to better understand the role of HL in IwMS as part of the holistic (self-)care process. If HL was captured as an outcome, the measurement instruments applied and the (interim) results obtained will be presented systematically.

This review focuses on the importance of HL in the context of self-management actions in IwMS. Desirably, the findings will promote patient-centered research in the field of IwMS.