OBJECTIVES: Multiple sclerosis (MS) is a chronic, progressive disease characterized by debilitating symptoms and causes great psychological and emotional distress. While fear of disease progression (FoP) has been widely assessed in oncology and other chronic conditions, FoP has been less studied in MS and prevalence of suitable patient reported outcomes (PRO) is unclear. This study aimed to identify existing instruments that have been used to measure FoP, and related concepts, in people with MS (PwMS).

METHODS: A literature review was conducted in Embase and Medline (December 2022). Search criteria were developed to identify MS studies utilizing PROs measuring FoP, worry, and health anxiety, among other terms. A supplementary search (Google Scholar) identified additional records not captured in the primary review.

RESULTS: 212 records were identified in the primary search and six records from the supplementary search. Following screening, sixty records were reviewed in full, from which thirty-nine PRO instruments were identified. The Hospital Anxiety and Depression Scale (HADS), a generic instrument, was the most prevalent questionnaire, followed by two MS PROs (MS Impact Scale [MSIS-29] and MS Quality of Life [MSQoL-54]). The Fear of Relapse Scale (FoR) and Functional Assessment of MS (FAMs) were the most relevant disease-specific measures as they contained FoP and health anxiety related items. The Fear of Progression Questionnaire (FOP-Q) was the most relevant generic measure, though utilized less frequently.

CONCLUSIONS: Many PRO instruments (e.g., HADS) have been used to measure emotional wellbeing in MS yet may not specifically assess the worry or fear of disease progression. PROs which focus on these concepts (e.g., FoP-Q) have been utilized, but lack MS-specific items. Recently, new PROs have been developed (e.g., FoR) in MS but are not widely implemented. As such, the development and implementation of MS-specific instruments, which evaluate the nuanced emotional and psychological experiences of PwMS, is supported.