Do people with multiple sclerosis in Saudi Arabia want to know their prognosis? A cross-sectional nationwide study.

OBJECTIVES

To investigate whether Persons with MS (pwMS) in Saudi Arabia want to discuss their long-term prognosis (LTP) and the factors influencing this decision using a self-administered online questionnaire.

METHODS

In this cross-sectional study, an online questionnaire was distributed from December 2022 to July 2023 across Saudi Arabia to determine pwMS interest in discussing their LTP. Participants included patients over 18 years, of any gender, diagnosed with MS. A nonprobability convenience sampling technique was used, with questionnaires sent through MS organizations and channels.

RESULTS

Almost two-thirds (66-68%) of the 375 respondents reported that their LTP had never been discussed during neurologist appointments and expressed uncertainty about it. Additionally, 23.5% noted discrepancies in information provided by different neurologists. Most (81.6%) expressed a desire for a prognostic tool at diagnosis. In this study, MS patients' desire to learn about a tool for assessing long-term prognosis was significantly associated with age, education level (<0.001), and gender (=0.02). A higher percentage of women (65.7%) showed interest in learning about the tool compared to men (34.3%).

CONCLUSION

While more than half of pwMS are curious about their prognosis, only about one-third have optimal discussions about LTP with neurologists. Many desire information on prognostic tools. Further research is needed to assess patients' knowledge of their prognosis and improve communication with physicians.