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Research participants struggle to understand test results

2019-03-26

Åsa Grauman, PhD student at the Centre for Research Ethics & Bioethics, asked people who participated in the large SCAPIS study how they perceived the test results they received after taking part in the project. They value the health screening, but identify shortcomings in the communication of test results.

The SCAPIS (Swedish CArdioPulmonary bioImage Study) research programme is a population study involving extensive measurements of 30,000 Swedes aged 50–64. The aim of the project is to find risk markers that allow prediction of who is at risk of cardiopulmonary disease, and prevention of this disease before it occurs. The study is a collaboration among six university hospitals in Sweden, funded primarily by the Swedish Heart-Lung Foundation.

People aged 50-65 need health screenings. Both to bring attention to their risk levels and to detect risk factors in time, before the strike of a heart attack. SCAPIS participants went through thorough health examinations, with both ultrasound and x-rays used to detect signs of cardiovascular disease. After, they received a written report of selected test results.

Åsa Grauman, PhD student at CRB, examined how participants perceived the test results, how test results influenced their lives and their perceptions of the risk of cardiovascular disease.

"People often rely on our general health level and bodily symptoms when they are assessing their risk of heart infarction. This is a bad idea. Risk factors, such as high blood pressure and high cholesterol levels show no symptoms, and arteriosclerosis is silent. The first symptoms of cardiovascular disease can be very serious, or even deadly", says Åsa Grauman.

Test results from SCAPIS did not contain enough information to increase participants’ knowledge of their own cardiovascular risk. The report provided no guidance on how to decrease the risk. If participants had an increased risk of cardiovascular disease, they were referred to a primary or secondary care provider. All participants received a report with selected test results. In an article recently published in Patient Education and Counselling, Åsa Grauman describes how participants had difficulties interpreting the report.

"For example, some were concerned about the test results from the coronary angiography. They did not understand what they meant, what was normal and what was not", Åsa Grauman explains.

SCAPIS participants who partook in Åsa Grauman’s study describe that if the report had been a total assessment of their health, and not a presentation of separate test results, this would have helped their understanding.

Many factors contribute to the total risk of cardiovascular disease. Lifestyle is particularly important. However, participants were inclined to simplify the causal relationships. They spoke in terms of either/or,  and attributed heart attacks to individual causes, such as either genetics or stress levels. Heredity was a major factor in the participants' perceived risk of cardiovascular disease.

The participants who found out they were at risk, with coronary stenosis or heightened cholesterol levels, were grateful for this opportunity. They could now be treated, and they felt safe in healthcare hands. Sometimes, finding out they were at risk was a motivation for lifestyle change.

"It was a sign they “had not done enough”. Participants with “normal” test results experienced something similar. Their lifestyle was “good” and there was no need for improvement. Test results was proof that their current lifestyle would not cause cardiovascular disease. This positive interpretation could give a false assurance. Running the risk of continuing bad habits that can increase the risk of heart infarction, simply because these habits have not resulted in clinical findings yet", says Åsa Grauman.

Despite the flawed communication of test results, SCAPIS participants valued the health screening. They realised that as they age, they need more frequent health screenings. From SCAPIS, they got the opportunity to discover health risks early, an opportunity to fix them and a confirmation that their health was under control. And they got the opportunity to prevent future heart infarctions. 

Grauman, Å., Hansson, M., James, S., Veldwijk, J., Höglund, A. (2019). Exploring research participants’ perceptions of cardiovascular risk information – room for improvement and empowerment. Patient Education and Counselling (Avaliable online) doi: 10.1016/j.pec.2019.03.010

Anna Holm