Objective:

This study aimed to identify patient reported outcome (PRO) instruments that have been used to measure fear of progression (FoP), and related concepts, in people with MS (PwMS).  

Background:

The unpredictability of relapse phases and progressive nature of MS often leads to psychological and emotional distress impacting quality of life among PwMS. While FoP has been widely assessed in oncology and other conditions, FoP has been less studied in MS and availability of suitable PROs for use in clinical practice and research is unclear. 

Design/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.

Results:

212 records were identified in the primary search and six records from the supplementary search. Sixty records were reviewed in full, from which 39 PRO instruments were extracted. The Hamilton 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 accompanying relapse or progression. PROs which focus on these concepts (e.g., FoP-Q) have been utilized, but lack MS-specific items. Recently, new MS PROs have been developed (e.g., FoR) but are not yet widely implemented. As such, the development and implementation of MS-specific instruments, which evaluate the nuanced emotional and psychological experiences of PwMS, is supported.