JMIR Publications

ABSTRACT

Background:

The internet has emerged as a primary source of health-related information for patients with multiple sclerosis (MS); however, the abundance of misinformation found online may pose a significant threat to patients.

Objective:

This study explored the knowledge and information-seeking behavior of MS patients followed at a specialised MS clinic, focusing on their ability to discern MS-related scientific facts and misinformation about alternative therapies.

Methods:

This was achieved through a survey containing socio-demographic questions and 20 true or false statements, covering both scientific fact and popular misinformation about MS.

Results:

The mean age of the 69 participants was 48.4 years old, 78% were women, 81.2% were highly educated, 89.9% were receiving a disease-modifying therapy and 51.7% had experimented with alternative therapies. The mean score for answering the scientific and misinformation questions correctly was 69% and 22%, respectively. Notably, when questioned about misinformation, answering correctly dropped significantly, indecision increased as well as answering incorrectly. Socio-demographic and medical questions were not significantly associated to scientific and misinformation scores; however, misinformation scores did significantly correlate with levels of education (p=.04). The main sources of health-related information were from expert led MS websites (82%) and healthcare professionals (58.6%).

Conclusions:

Education at the clinic and consulting primarily moderate-high quality sources did not safeguard against misinformation, indicating a need for more misinformation-geared education at the clinic.