How do people with MS navigate online treatment information?

Details

The Internet is becoming an increasingly prominent source of health information for people with multiple sclerosis (MS). Yet little research had explored their needs, experiences and preferences for integrating treatment information into decisions while searching online. This study aimed to explore those questions.

Sixty participants—51 people with MS and nine family members—took part in a focus group or online forum. They were asked how they find and assess reliable treatment information, particularly online, and how this changes over time. The researchers used thematic analysis underpinned by a coding frame.

Participants described having both too much information online and too little that applied to them. They spoke of wariness and scepticism, but also empowerment. For many, access to up-to-date, unbiased treatment information, including practical and lifestyle-related information, was important. Many wanted a ‘research partnership’ with health professionals and developed a range of strategies to enhance the trustworthiness of online information.

The researchers used the term ‘self-regulation’ to describe changes in participants’ information seeking over time in response to changing information needs, emotional state and growing expertise about MS. They concluded that people with MS had developed several strategies to find and integrate treatment information from a range of sources. Participants’ reflections informed the development of an evidence-based consumer website based on summaries of MS Cochrane reviews.