What Kind of Information Do Patients with Multiple Sclerosis Want?

Patients with multiple sclerosis (MS) often seek information from the Internet. Researchers in Italy interviewed 3 focus groups of patients with MS and 3 focus groups of family members of patients with MS to determine how physicians might improve access to the right type of information.

Patients reported using the Internet to find strategies for everyday coping, including dealing with MS-related physical problems, medication adverse events, bladder function problems, avoiding bruising with interferon injections, and maintaining an adequate sex life despite disability. Patients also searched for information on the interpretation of diagnostic tests, such as magnetic resonance imaging results.

The study also indicated they had found gaps in the information available online. For example, patients said that they would like to know more about alternative therapies and lifestyle interventions. Many patients were interested in new therapeutic options under investigation in clinical trials, but believed that online sources for patients were inadequate.

Family members sought different types of information, such as information on Social Security benefits, how to obtain work status protection for family members with MS, and use of medical devices to help maintain independence.

Some patients reported actively avoiding information about MS. Often, patients reported, after they came to accept the diagnosis of MS, they began looking for information again.

One patient said, “At the beginning, I tell you one thing, you don’t want to know too much… [but] over time you become aware and want to know more and more.” Simply asking patients whether or not they are searching for information online may be a way of assessing their acceptance of the disease and their openness to discussing treatment options.

Encouraging patients to seek information from appropriate online sources and discussing potentially embarrassing questions with them may improve their ability to cope with MS. For example, asking patients about their sexual functioning, and whether or not they are having cosmetic issues with interferon injections, could help break down communication barriers and improve patient access to reliable information.

References

Colombo C, Mosconi P, Confalonieri P, et al. Web search behavior and information needs of people with multiple sclerosis: focus group study and analysis of online postings. Interact J Med Res. 2014;3(3):e12.