The information in patient-directed knowledge tools should reflect what is in the guideline. Only diagnostic and care options provided in the guideline should be included (SIGN 100 2019, van der Weijden 2019).
A series of focus groups and other qualitative work with patients and the public (DECIDE patients and public, SIGN 100 2019, Cronin et al. 2018) found that the following issues are considered important when using information from guidelines :
- Context: who is the information for?
- Background information about the condition:
- What are the risk factors?
- How will the condition progress?
- How long will the condition last?
- What is the risk of other problems arising from the condition?
- Information about the diagnostic and treatment interventions:
- What are the treatments, including the alternatives?
- What are the risks associated with treatments?
- What can I do for myself (that is, self-management)?
- Where can I find more help (for example, phone numbers and websites for sources of support)?
- How are guidelines produced?
Patient-directed knowledge tools, such as patient versions of guidelines, should highlight that there may be other well-known treatment options available but that they are not covered and thus not recommended by the guideline. This may be either because of lack of evidence, lack of resources and prioritisation or because they are outdated. This helps to clarify for patients that there are other options available but they have not been recommended by the guideline because of lack of evidence.
Additional information may be included in patient versions of guidelines if it helps to foster an understanding of the recommendations or supports self-management. Including information not directly linked to recommendations is of value and allows people to participate in shared decision making. If there is content in the patient version that is not in the guideline, this has to be made explicit. Furthermore, the guideline panel should check this type of information for consistency with the guideline. How the information was generated should be documented transparently (for example, based on patient experience, systematic search or qualitative research). The case study in table 2 explains how information that was important to patients but not recommended in SIGN’s guideline was included in the patient version.
Tick boxes or other interactive tools are useful formats for information not linked to recommendations (DECIDE patients and public). Guideline producers committed to providing patient versions will need to consider each guideline individually to determine the intended purpose of the patient version and then decide on the content (van der Weijden et al. 2019).
Research has shown that people will often ignore health information if it does not seem to apply to their individual circumstances. Therefore, patient-directed knowledge tools, such as patient versions of guidelines, should be clear about who the information is for. Making the applicability of a patient version of a guideline clear, using text such as ‘what does this have to do with me?’, is essential (DECIDE patients and public, Cronin et al. 2018, Loudon 2014, van der Weijden et al. 2019). However, around only half of current patient versions in the English language do this (Santesso et al. 2016). Figure 1 provides a simple example of how this can be done. It shows the information from a patient version in SIGN’s patient booklet on delirium, which explains who the booklet is for and what it is about. The context for using the booklet is clear; the information in the leaflet adds to the information provided by the people involved in a person’s care. Although written for patients, the booklet acknowledges that family members and carers may also read it.
If treatment recommendations apply only to a specific type of disease, it is helpful to make it clear that only patients with this specific diagnosis will benefit from the information. For instance, a guideline for the treatment of exocrine pancreatic cancer will not be relevant to patients diagnosed with endocrine pancreatic cancer, although they themselves will not be aware of this difference. If there are subgroups that have a larger or lesser benefit from interventions, this should also be made clear in the patient version or knowledge tool.
Figure 1 Information from SIGN’s patient version of the guideline on delirium
Downloading material from a guideline developer’s website, or using an online tool, supports patients in discussing their care with healthcare professionals (Cronin et al. 2014, Utranker et al. 2018). Guideline producers should consider how the document might be used and word it accordingly.
Patients and the public have wider information needs than knowing the treatment options available for a particular condition or problem. When asked, many people thought guidelines could be a simple tool to provide health information, as well as recommendations (DECIDE patients and public). Focus group and user-testing work also found that participants had information needs that were more general than treatment recommendations. These included questions about whether the condition could be prevented, how it would progress, and would it lead to anything else. In particular, knowledge of progress and natural history of a condition may help to assess benefits and harms of different treatment options (DECIDE patients and public). Circumstances of the technical delivery of treatment options may influence the decision-making process (such as, weekly delivery instead of a single intervention, and inpatient instead of outpatient treatment or another arrangement).
Guidelines generally don’t provide much of this sort of information as part of the standard guideline production process. For example, the information for the public in the National Institute for Health and Care Excellence (NICE) guideline on depression in adults (CG90 2009) contains little background information on depression. Guideline producers may have to make a choice between not providing information (even though patients and the public may want it) or doing extra work because their standard guideline production process does not routinely generate this information. Taking the former route may lead to information that is less useful than it could be. If taking the latter route, guideline producers may limit the need for extra work by asking patients on the guideline development group what information matters to them, especially those who are representing a wider group of patients. In the NICE depression guideline it was important to describe mild, moderate and severe depression because different recommendations are made for each type of depression. Some of this additional information may be sourced from the appropriate patient information groups for use in patient-directed knowledge tools. Links to local sources of support for patients and the public can also be provided.
What are the treatments and risks associated with them?
Similar to in the section about background information, guideline producers will need to balance the amount of information to provide and what is available in the original guideline document. Again, producers may consider background information about the treatments or interventions that will assist people in understanding the recommendations and treatment implications (DECIDE patients and public, SIGN 100 2019).
What can I do for myself?
The importance of presenting recommendations that relate to self-management is one of the strongest messages coming from research with patients and the public (DECIDE patients and public). It also emerged in a review of patient and public attitudes to guidelines as one of the purposes of patient versions (Loudon et al. 2014). Relatively few patient versions of guidelines in the English language currently meet this need (Santesso et al. 2016). German patient versions have a mandatory section called living with the disease, in which recommendations for self-management are addressed.
Presenting recommendations linked to self-management are therefore ones to prioritise when deciding which recommendations to cover in guideline-based information. Guideline producers may also want to consider whether to provide additional information about how people could apply the recommendations in their daily lives. When presenting additional information alongside recommendations, it should be clear that this information is not evidence based and is based on patient or expert opinion. The guideline group should check that additional information is consistent with the guideline. However, additional information may be very helpful for other patients if based on patient experience (Schaefer et al. 2015). Guidelines rarely address issues that matter most to patients like treatment burden or the impact that a condition has on daily life and how to deal with that. Information reporting patient experience must be carefully checked to ensure that it contains no effectiveness claims regarding treatments.
The case in table 3 is based on a German guideline on gastric cancer. It shows an example of when patient knowledge and experience led to including additional information in a patient version that was more valuable for users than the guideline recommendations.
Table 3 Integrating patient experience in the German patient guideline on gastric cancer
| What kind of patient experience did the patient guideline include? | There was a complete lack of evidence on what patients who had had surgery for gastric cancer should eat. The guideline did not address this question. However, the patient organisation involved stated that, based on their counselling experience, most patients reported that was the most important issue and barrier in their daily life and had much impact on their wellbeing. |
| How was this experience-based knowledge retrieved? | Based on collective experience retrieved through discussions in self-help groups, feedback from counselling (patient hotlines), and chats in patient forums, a patient group compiled a list of foods that seemed to be beneficial for patients after gastric surgery, and food that might be intolerable. They also provided experience-based strategies on how to start eating after surgery, and how to adapt nutrition to individual needs. This list was forwarded to the nutrition experts involved in developing the clinical practice guideline (CPG) and checked for plausibility. |
| How was the information presented in the guideline? | The patient version contained a chapter on nutrition. The introduction stated that the following information was not derived from the guideline but from patient experience. Important strategies and the lists of foods were presented. Information specialists checked that the wording was not directive but always reflected that the information was based on experience. For example, instead of writing ‘Do not drink coffee’ they suggested ‘some patients have reported a bad experience with drinking coffee’. |
| How was this chapter received? | Patients reported that for them, this section contained the most helpful information of the whole patient version. This is especially important because this information was not in the CPG, indicating that information that truly helps patients may partly differ from guideline content. |
Where can I find more help?
Many patient-directed knowledge tools provide links or contact information, such as telephone numbers for additional information and support, a need that has been highlighted by patients and the public (DECIDE patients and public). Those developing guideline-based patient information should consider highlighting other sources of information including:
- contact details of relevant organisations
- relevant websites, including those focusing on financial benefits and returning to work
- other useful publications.
The sites or organisations listed in information should be reputable and assessed as providing high-quality support or information. Tools, such as the DISCERN questionnaire and the PEMAT, are a valid and reliable way for guideline developers to assess the quality of information provided by other organisations (DISCERN, Shoemaker et al. 2013).
Patient versions of guidelines might also provide practical advice, such as what to think of before an appointment with a doctor, or suggest questions to ask when talking to healthcare professionals. Patients involved in developing the patient version can compile their own experiences and offer tips on how to deal with the condition in daily life. For example, a patient version on diabetic foot problems could provide information on what to think of when buying shoes. This is an issue unlikely to be addressed by the guideline but which matters a lot to patients with diabetic foot syndrome. Also, patients involved in developing patient versions, as well as those involved in any wider consultation, can use their own experience and judgement to highlight further information they think would be important to other patients and information that goes beyond the information covered by the guideline. It should be clear in the patient version that further information is based on the experience of patients and not on a systematic search and appraisal of the evidence.
How are guidelines produced?
Patients and the public have very limited awareness of guidelines (Loudon et al. 2014, Sentell et al. 2013). When they are aware of them, they often think they are intended to restrict or ration the care available (van der Weijden at al. 2019). Research shows that some patients worry that guidelines might impair the relationship with their healthcare professionals by suggesting reduced confidence in them (Loudon et al. 2014). A patient version of a guideline is an opportunity to allay these fears but care is needed to avoid providing too much, complex information about how the guidelines were developed. Some, but not all, people are interested in this information (DECIDE patients and public).
People have found process diagrams, such as the one in figure 2, useful and can help them to understand how information was produced. Although there are some differences in opinion, there is preference for this information to be at the back of the patient version. This is to ensure that the information that most people are interested in comes first, and those who want to can still navigate straight to the information on the guideline process (DECIDE patients and public). Nevertheless, patients taking part in German focus groups expressed a need to have this information at the beginning, because it would allow them to understand the extent to which the information that followed was reliable (Schaefer et al. 2015).
Figure 2 Example of a process diagram used by SIGN