Online forum reveals users may stop taking stroke-prevention pills

(Reuters Health) - - Stroke survivors may grow frustrated with doctors’ advice and ultimately stop taking medicines that could prevent a second stroke, suggests a new analysis from the UK.

Researchers who tracked internet discussion-board conversations about stroke found that most survivors followed their doctors’ advice but some stopped taking medications due to side effects.

“Family practitioners should make patients aware of multiple treatment options and the potential need for several changes in medication, and actively follow-up with their patients when providing advice or changing treatment due to side effects, such as aches and tiredness,” said senior author Anna De Simoni, of Queen Mary University of London.

De Simoni and colleagues write in Family Practice that three in 10 stroke survivors will go on to have a second stroke. Medications that lower blood pressure and cholesterol and thin the blood can reduce that risk by up to 75 percent.

Past research suggests patients who are prescribed these so-called secondary prevention medications may have trouble sticking to their regimens, the authors write.

For the new study, De Simoni’s team focused on posts made by 50 participants on the online TalkStroke forum, including 33 stroke survivors and 17 caregivers of stroke survivors.

Most people reported sticking to doctors’ orders, but that wasn’t always the case when people experienced side effects they felt were due to cholesterol-lowering medications known as statins, for example. Common side effects of those drugs include fatigue, headaches and muscle aches and pains.

“When suffering from statin side effects, patients did make contact with their doctors in the attempt to manage them, but I was surprised to see that they seemingly lost hope after only one or two contacts with their family physicians, unaware that a better regimen may have been available or that their doctor would have been able to carry out another change in medication,” De Simoni told Reuters Health in an email.

Side effects led to “anxiety and resentment” among patients, who felt their needs weren’t always being addressed by their doctors, the researchers found.

“The online dialogue between stroke survivors and carers offers a deeper understanding of the barriers to persistence with secondary prevention medications,” said De Simoni.

The research team found that people responding to the posts were generally supportive of doctors’ advice, and none of the posts was incorrect or misleading. “The forum’s ‘super-users’, who had a high number of connections with other participants, played an important role” in the quality of the content, said De Simoni.

The researchers warn that secondary stroke prevention has changed since the last posts analyzed in this study were written in 2011, so these patients’ issues may not reflect what happens in today’s doctors’ office. Additionally, the discussion board users were young; their behavior may not reflect the actions of older stroke patients.

“These findings indicate the need to raise patients’ awareness of the existence of several cholesterol lowering treatments and approaches to manage side effects,” said De Simoni.

SOURCE: Family Practice, online April 10, 2017.