[Guideline-recommended standardized instruments in multiple sclerosis : A comparative content analysis based on the...

Guidelines serve as practice-based decision support and recommend the use of standardized instruments to measure functional capacity in individuals with multiple sclerosis (MS). However, the extent to which a person's functioning is captured by these instruments is unclear.

The aim of this study is to link the content of the MS disease guideline with the International Classification of Functioning, Disability and Health (ICF) in order to capture the distribution of the content on the functional domains and contextual factors and to uncover existing gaps.

Instruments of the S2k guideline "Diagnosis and therapy of multiple sclerosis, neuromyelitis optica spectrum diseases and MOG-IgG-associated diseases", which were available free of charge in German or English and designed for adult people, were included. The instruments were classified into their meaningful concepts (meaningful concepts = MCs) and subsequently coded using standardized ICF rules by two raters.

The 23 included instruments contained 351 items and 718 MCs. Of these, 663 MCs could be linked to the ICF according to the coding rules. Of these, 51% (340 MCs) related to body functions, 44% (291 MCs) to the activity and participation component, and 5% (32 MCs) to environmental factors. The most frequently coded chapter was mobility (d4) with 201 MCs. Interrater agreement was k = 0.79.

The linking of the guideline-recommended instruments to the ICF shows that the instruments cover different themes. The area of environmental factors is underrepresented. The ICF linkage reveals a broad spectrum of functioning covered by the guideline-recommended instruments and facilitates the selection of appropriate instruments for the affected persons.