Some stroke survivors say they are disregarding general practitioners' (GP) advice on secondary prevention medications, such as statins, with some patients stopping their medication completely, according to a study of an online stroke forum led by Queen Mary University of London (QMUL).
The researchers say that GPs 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.
Three in 10 stroke survivors will go on to have a further stroke, which causes greater disability or even death. Secondary prevention medications, including antihypertensives, blood thinning and lipid lowering agents, such as statins, can reduce risk of stroke recurrence by up to 75 per cent. However, patients' persistence with these medications decreases over time because a minority of people experience side effects, which are mild in most cases.
The analysis, involving University of Cambridge and published in the journal Family Practice, was performed on the archives from TalkStroke, a UK online forum hosted by the Stroke Association. The forum is used by patients with stroke and their carers, and generated 21,596 posts during 2004-2011. 50 participants were found to discuss GP advice on prevention medications in 43 discussion threads.
The side effects of secondary prevention medications, and statins in particular, were found to cause anxiety and resentment in some patients, and their concerns were not always addressed by GPs. While most advice was followed, GP advice was sometimes disregarded when related to dealing with statin side effects. Some patients even stopped the medication after just one or two attempts by the GP to adjust statin treatment.
Lead Researcher and NIHR Academic Clinical Lecturer Dr Anna De Simoni from QMUL said: "I am a GP and these findings have changed my own practice when I start patients on statins and when they consult about side effects.
"Given the variety of cholesterol lowering treatments and possible approaches to manage statin intolerant patients, I was surprised to see that patients seemingly lost hope after only one or two contacts with their GPs, unaware that a better regimen may have been available or that their GP would have been able to carry out another change in medication.
"In my practice I am now advising patients that multiple treatment options are available, and several attempts may be required before a suitable treatment is found. It is also important to pro-actively invite them to seek help if side effects are experienced and don't improve."
The researchers say that advising patients to persist with statins side effects to prevent further strokes could result in the patient stopping the medication. Following up patients (even by telephone) after any change in treatment or advice could ensure issues are resolved.
The study found that forum participants did not make incorrect or misleading statements, but instead provided appropriate peer support, underlined the central role of GPs in managing medications, and their shared-decision making with clinicians was improved by online peer-to-peer discussions. The forum's 'super-users', who had a high number of connections with other participants, played an important role in this.
Considering the ease, low-cost and advantages of obtaining patient information from online fora, the researchers say that more attention could be paid into studying health issues using data from online communities. This could allow collection of data from participants who might not take part in traditional research studies and from a wider geographical location.
The study is limited in that the data are old (2004-2011), the identity of users could not be verified, the forum was moderated, and older patients might be under-represented.
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Notes to the editor
Research paper: 'How do stroke survivors and their carers use practitioners' advice on secondary prevention medications? Qualitative study of an online forum'. Nkeonye J Izuka, Matthew A W Alexander, Chantal Balasooriya-Smeekens, Jonathan Mant and Anna De Simoni. Family Practice 2017. doi:10.1093/fampra/cmx023
Available online after the embargo lifts: http://dx.
About Queen Mary University of London
Queen Mary University of London (QMUL) is one of the UK's leading universities, and one of the largest institutions in the University of London, with 23,120 students from more than 155 countries.
A member of the Russell Group, we work across the humanities and social sciences, medicine and dentistry, and science and engineering, with inspirational teaching directly informed by our research. In the most recent national assessment of the quality of research, we were placed ninth in the UK (REF 2014).
As well as our main site at Mile End - which is home to one of the largest self-contained residential campuses in London - we have campuses at Whitechapel, Charterhouse Square, and West Smithfield dedicated to the study of medicine, and a base for legal studies at Lincoln's Inn Fields.
We have a rich history in London with roots in Europe's first public hospital, St Barts; England's first medical school, The London; one of the first colleges to provide higher education to women, Westfield College; and the Victorian philanthropic project, the People's Palace at Mile End.
Today, as well as retaining these close connections to our local community, we are known for our international collaborations in both teaching and research.
QMUL has an annual turnover of £350m, a research income worth £125m (2014/15), and generates employment and output worth £700m to the UK economy each year.
About the National Institute for Health Research (NIHR)
The National Institute for Health Research (NIHR) is funded by the Department of Health to improve the health and wealth of the nation through research. The NIHR is the research arm of the NHS. Since its establishment in April 2006, the NIHR has transformed research in the NHS. It has increased the volume of applied health research for the benefit of patients and the public, driven faster translation of basic science discoveries into tangible benefits for patients and the economy, and developed and supported the people who conduct and contribute to applied health research. The NIHR plays a key role in the Government's strategy for economic growth, attracting investment by the life-sciences industries through its worldclass infrastructure for health research. Together, the NIHR people, programmes, centres of excellence and systems represent the most integrated health research system in the world. For further information, visit the NIHR website