This is a plain English summary of an original research article
Blood test results can help diagnose and monitor health conditions, and offer reassurance. However, research found that patients’ lack of understanding about the purpose of tests could lead to frustration, anxiety, and uncertainty. The authors call for more information and open communication to help patients engage with decision-making.
People need clear information to reach shared understanding with their clinician about the purpose of a test. Shared decision-making (on whether to have a test) is based on this shared understanding. Shared understanding and shared decision-making are best practice in choosing treatment options. Their role in testing decisions is less explored.
This study focused on blood tests for inflammation. Researchers interviewed patients and GPs and found a mismatch in their expectations and understanding of blood tests. There was no evidence of shared decision‐making; patients did not know there were alternatives to having a test, and that they had choices.
The researchers say better shared understanding of testing is needed before, during and after testing. Patients need more information about the purpose of tests, and what the results could mean. They valued explanation of all results (including those in the normal range).
More information on blood tests is available on the NHS website.
The issue: do people know what blood tests are for?
Blood tests in primary care are used to diagnose conditions and to monitor people’s health. For example, the level of inflammation might suggest (or rule out) infections, cancer, or other conditions.
Tests rarely offer a specific diagnosis but often guide management of a long-term condition. Even a positive test (indicating inflammation, for instance) can validate people’s symptoms. However, sometimes results are incorrect or uncertain. This can lead to unnecessary follow‐up appointments, further tests, and referrals.
Doctors and patients therefore need to have a shared understanding of the reasons for testing and the potential pitfalls. They then can share decision-making, on whether to have a particular test.
In selecting treatments, shared decision‐making is best practice. It means that decisions are based on patient preferences and clinician recommendations. But there is little research into how decisions on testing are made.
This study examined communication and decision‐making about blood tests for inflammation in primary care.
Researchers interviewed 28 patients at the time of their blood test, and again, 1-2 weeks later, when they had received the results. They also interviewed 19 GPs (from 6 practices) after they ordered the test (they could consult medical notes). The interviews explored the reasons for the test, expectations of the results, and communication. Patients were also asked about their experience of receiving results.
A group of 5 people with lived experience of blood tests contributed to the design and analysis of the study. They contributed to the patient information materials, to the interview questions and to the analysis of emerging data. This ensured the research was relevant to people’s experience.
Most people saw tests as ‘a good thing’, and a sign the doctor was taking their symptoms seriously. They had high expectations, felt that testing validated their symptoms, and hoped results would lead to a treatment plan: ‘I think it will make me feel a bit better knowing… there's actually a reason why I might feel the way I do.’
Doctors saw tests as providing clues to possible diagnoses but they had lower expectations than patients (informed by tests’ limitations); they rarely shared their reservations. Doctors often expected tests to rule out conditions, while patients expected them to confirm diagnoses. One doctor tried to address this mismatch, saying: ‘I expect they'll be normal but that will be great and reassuring.’
- Patients' involvement in decisions
There were no examples of shared decision-making. Some patients believed they had made a shared decision, but their recollection suggested they simply agreed with the doctor’s decision.
No patient recalled being offered an alternative, or no tests. One person said, ‘I think you can always say, ‘no, I don't want it done’, but… what choice do you have really?' 3 out of 28 people requested a blood test; one expressed frustration at needing the doctor's ‘permission’.
- Information sharing
Fewer than half of the patients knew why they were being tested. Afterwards, everyone with abnormal results received an explanation, and were often reassured, even if the abnormality was unlikely to explain their symptoms: ‘It was like oh I have a surprise deficiency. Obviously, I'm really pleased that that was found.’
Most people with normal results received little information. When they had expected tests to find the cause of their symptoms, normal results were not necessarily reassuring: ‘well that's another thing that doesn't give me the answer then.’ By contrast, most doctors found normal results reassuring and thought less explanation was needed than if results were abnormal.
- The doctor’s decision
Overall, open communication around blood tests was lacking and some doctors felt justified in making testing decisions: ‘Our GP trainees… are very good at doing shared decision‐making. I'm probably… a bit more old‐fashioned.’
Most people wanted to know what was being tested for, and why. But doctors and patients agreed that detailed information about blood tests could be too complex for people to understand. A lack of time and patient materials were barriers to shared understanding.
Some doctors withheld information to avoid worrying people. For example, they used general terms to describe what they were testing for instead of mentioning possible serious diagnoses such as cancer. But patient interviews showed that a lack of information was likely to promote anxiety: ‘I worry more by not knowing.’
Why is this important?
Patients and doctors did not have shared understanding of blood tests; there was no evidence of shared decision‐making. People lacked information and understanding and were unable to develop informed preferences on whether to have a test; they did not think they had a choice. This was disempowering and made patients reliant on the doctors' judgement and advice.
Most doctors use shared decision-making for treatments, but are less clear on how to do this for diagnostic tests. A shared understanding of what testing is for and what the results mean is an important step, the researchers say.
There were examples of good practice. Some doctors built shared understanding and expectations of tests through open communication and explanation of normal results: ‘So I said to her if they're completely normal I'll be very happy that it's not this condition. If they are very raised, I will phone you and we'll treat you with steroids, but I expect they may well be normal.’
The study relied upon people’s recollection of events (which could have been inaccurate), and their medical notes (which may not have contained all the information shared). The study was relatively small. A larger study may be needed to confirm these findings.
Shared decision-making on whether to have a test could prove challenging for GPs during a 10-minute consultation. However, the researchers recommend giving patients sufficient information to understand what tests are being done and why. They suggest GPs address patients’ expectations about the results, in advance. Afterwards, it would be helpful for patients if doctors discuss all results (even when they are normal) and how they relate to symptoms or treatment.
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This Alert is based on: Watson J, and others. Blood tests in primary care: A qualitative study of communication and decision‐making between doctors and patients. Health Expectations 2022; 25:2453–2461.
A related study focussing on systems used to communicate test results: Watson J, and others. ‘I guess I’ll wait to hear’—communication of blood test results in primary care a qualitative study. British Journal of General Practice 2022;72:e747-e754.
A poem created by the researcher using patient quotes from the study.
A website that provides plain language information about blood tests created by the Association for Clinical Biochemistry and Laboratory Medicine.
Patient information about shared decision-making.
Funding: This study was funded by an NIHR Doctoral Research Fellowship.
Conflicts of Interest: The authors had no conflicts of interest.
Disclaimer: NIHR Alerts are not a substitute for professional medical advice. They provide information about research which is funded or supported by the NIHR. Please note that views expressed in NIHR Alerts are those of the author(s) and reviewer(s) at the time of publication. They do not necessarily reflect the views of the NHS, the NIHR or the Department of Health and Social Care.