Patient views on understanding laboratory results

Background

This is a very important and topical subject. Technology now makes it easier to transmit results electronically from the laboratory to those requesting the investigations. This technology also makes it possible for patients to access their laboratory results. This paper uses examples from the UK with its more centralised national health service (NHS) funded out of general taxation. It is appreciated that in Europe there are different types of health care systems that are less centralised than the system in the UK. It is not within the scope of this paper to describe these different systems. I hope it is sufficient to say that the principles described in this paper can apply to all types of health care systems although they may be more challenging to introduce in some systems.

In the UK all patients have a right to be registered with a general practitioner (GP) who keeps their medical record. This is an important record that is owned by the Secretary of State but kept in safe keeping by the GP. The record covers the medical history of patients “from the cradle to the grave”. In 1998 UK NHS patients gained the right to view their GP medical record. While this was progress, it was a cumbersome process for both patients and the practice. Some patients wanted only a photocopy of a part of their record for which they had to pay. Others wished to view the whole record. This required the record to be read beforehand by a member of staff to remove the identity of any third parties mentioned in the notes as well as information considered to be detrimental for the patient to see. Furthermore viewing the record requires space and a member of staff on hand. By the end of 2018 all patients in England should be able to access their GP medical record on line though progress is slow and not yet available for all patients. This record includes laboratory reports instigated in primary care as well as some reports from secondary care. It does not include the full hospital medical records [1].

Reasons why patients may wish to view their laboratory results

There are several reasons why patients view their medical record. Patients may simply be curious to find out what is included in the report. Some patients ask for the results. There are increasing numbers of patients with several life-long conditions [2]. Many of these patients are involved in self-monitoring their condition or conditions. It is, therefore, helpful for them to know the results of tests. Some of these patients may be able to adjust their treatment within certain limits. Such patients may use regular medication, have read the patient information leaflet (PIL) and wish to understand any long-term implications. Other patients may wish to refresh their memory and prepare for consultations with hospital or GP [3]. Direct patient access to laboratory results has the additional benefit of acting as a safety net if clinically important results are overlooked by the clinician [4]. Patients who have had investigations requiring laboratory analysis may assume that they will receive the results quickly but this is not always the case. We live in the electronic age when patients expect to be able to receive their results quickly, possibly on their computer or phone. The problem of patients receiving test results in a timely manner also applies to hospital outpatients where the review interval may be up to 1 year between appointments.

Challenges created for laboratory staff

This paper is concerned with laboratory reports that are generated by GPs and thus mainly involve clinical chemistry, haematology, immunology and microbiology. These reports will be predominantly numerical reports. It is understood that tissue pathology and medical genetic reports raise some very important and sensitive ethical issues. As such investigations are less likely to be initiated by GPs, their implications are not discussed in this paper.

The ability for patients to have easy access to their medical records can create challenges for staff. Patients do not form a homogeneous group. Not all speak the same language. It is necessary to consider sensory deprivation and intellectual incapacity. It is also known that there are poorer health outcomes for those with poorer health literacy and numeracy skills [5], [6]. There are different education levels, with some patients being able to source information from elsewhere including the Internet, television and media, friends and mobile health apps. The reliability and accuracy of such information is not always known. The referring clinician and organisations like Lab Tests on Line [7] are reliable sources of information. Both of these require the confidence of the patient to ask questions as well as having the ability to search for information on line. Hibbard and Gilbert [8] remind us that patients need to have the knowledge, skill and confidence to manage their own health and that there are many patients who would rather not think about their health as well as having limited problem-solving skills.

The range of information patients need to know about laboratory tests

So often patients are told that a sample will be sent for a “test” without any explanation about what tests are being suggested, what they are for and which conditions can be identified. There are several reasons why laboratory tests are recommended [9] including to monitor a treatment that the patient is taking or to eliminate or identify a particular illness. It is appreciated that clinicians who suspect a more serious condition may not wish to disclose this to the patient until they have evidence. It should, however, be remembered that patients themselves often suspect problems. There is evidence [10] that a discussion with patients about which test is being recommended and how tests are interpreted can have a very positive impact on the doctor-patient relationship and improves patient satisfaction with their care. The consent of the patient should also be obtained before tests are carried out. Patients also may wish to know where the tests will be done and when they will receive the results and how they will be informed [8], [11].

Dealing with uncertainty in modern medicine

It may be difficult for patients to appreciate that medical science is not an exact science. How is this uncertainty to be explained to patients? In 2018 the focus is on sharing information with patients and shared decision making between health care professionals and patients. And this also means sharing uncertainty with patients. This will include patients:

1. who are interested in their results

2. who are monitoring their own treatment

3. who have long-term conditions

4. who are concerned about or interested in drug treatments

5. and carers.

Sharing information and uncertainty with patients also requires trusting patients [11], [12]. For laboratory staff it means considering carefully the words that are used in reports.

There are many words used to describe certainty and uncertainty including:

These are adapted from Hogarth [13].

Getting results

How the patient receives the results of tests is so obvious to patients but perhaps not always considered by laboratory staff accustomed to sending results only to the referring clinician with the report not being seen directly by the patient. This is now changing as patients are increasingly having access to their GP record digitally including the laboratory reports. Traditionally patients have received their results from the referring health care professional. Hospital-initiated results are usually discussed with the patient on the next out-patient visit. When patient are in-patients in hospital, laboratory results should be discussed with them.

Patients need to know that there is a clear system for them to receive results including from whom and when will they receive results. Some patients may prefer to have an explanation of the meaning of the results from a clinician, others may be happy to see the results on their computer, smart phone or receive them by text [9], [14].

More challenging for laboratory staff is now dealing with laboratory reports, initiated in general practice and that can be seen by patients accessing their records and without a prior discussion with a health care professional. It is worth noting that there is no evidence of detriment to patients in terms of increased anxiety when these patients do not have a discussion with a health care professional prior to seeing their results [15].

Laboratory staff now need to consider including in their reports a definition of what is normal and whether the results are within the normal range for the population or for the age group or for the individual patient. Patients should know whether the tests are definitive and if not, what are the limits. It is unlikely that the majority of patients will use the word definitive.

It is also necessary to share with patients how laboratory test results are interpreted including what different risks mean. The communication of risk is difficult. How risk information is presented including graphically, visually and verbally is well described by Ahmed et al. [16] There is considerable variation in the general population in how people interpret words and numbers. A patient’s perception of risk may be very different from that of health care professional. In one small study [17] it was found that a 50–50 chance of inheriting a serious genetic disorder was understood by patients to be a medium risk while geneticists would consider this to be a large risk. The way that risk is communicated verbally may also affect their understanding. For example whether a negative or positive outcome are said first in “there is a 30% chance of something happening or a 70% chance of something not happening”.

In describing risk it is useful to consider using a mixture of both words, pictograms and numbers such as those described in Anaesthesia Explained [18]

very common, common, uncommon, rare, very rare

1in 10,1in100, 1in 1000, 1in 10,000,1 in 100,000 (11, 12)

Patients also wish to know that the result is normal. It is not sufficient for them to have to assume that “no news is good news”. Nor is it sufficient to be told by a receptionist that the results are “fine”. Patients also need to know what “fine” means. It is helpful to patients if tests results are explained to them in terms of their overall condition. It is understood that laboratory staff do not always know why the test was requested as this information is frequently not included in the test request form making it more difficult for an appropriate and helpful for the patient interpretation to be included by laboratory staff in the report. In such circumstances an appropriate interpretation by laboratory staff could conflict with the interpretation of the referring clinician with the possibility of causing confusion and even anxiety for some patients.

Sharing decision making

In 2018 all patients in England should have access to a contemporary digital record of dates, diagnoses of illnesses, investigations carried out, results, treatments, medication and what the clinician has said so that there is a record about the thinking about the reasons for the test. This record should also include any known allergies and adverse reactions to medication. In the electronic age, making this happen surely cannot be difficult. Technology certainly helps, but it is also necessary for a cultural change amongst all health care professionals to acknowledge that involving patients in decision making saves money for health services and saves time for patients and staff.

From a patient perspective sharing decision making about laboratory test results should involve clinical staff, laboratory staff and the patient. Currently patients have access to clinical staff but less frequently to laboratory staff except for those patients with specific medical conditions requiring frequent laboratory investigations. There are considerable potential advantages for patients to be able to contact the laboratory directly to for example to clarify the meaning of a particular result. This could be extremely helpful for patients monitoring and self-managing life-long illnesses and carers or family members looking after such patients at home thus saving the patient’s time – a factor often forgotten in health care – as well as clinician’s time. There will be a cost to hard pressed laboratories as well as a need to clarify the flow of communication between patient, laboratory and referring clinician and where responsibility lies. Laboratory staff will need training to deal with the patient queries. The potential advantages are great particularly now that so many conditions previously treated only in hospital are being treated at home and often managed by the patient with support from general practice.

Furthermore better understanding by patients both of the reasons for doing the tests and of the meaning of the results has shown to give an increase in patient satisfaction with their care [14]. In his powerful book, Jay Katz [19] reminds readers that true and quality communication between doctors, heath care professionals and patients, who are part of the team, helps build lasting trust and enables decision making. This is a goal worth working for.