sBMJ | Producing patient literature

Producing patient literature

Students are sometimes asked to produce a patient information booklet as a project or module on their course. Richard Crane and Bakula Patel explain how to get started

Many hospitals, charities, and support groups produce their own literature on a wide range of topics. Evidence shows that patients' recall of a consultation is often poor.¹ So as people increasingly want to participate in choosing their care, literature for patients is a useful resource. Information can be read and absorbed at their own pace. But the standard of this information is often inadequate, either being presented poorly or with inappropriate content.² Medical students are sometimes asked to contribute to these resources either as a course module or project.

When writing patient information, there are three things to think about:

What does the patient want to know?
What messages does the medical profession want to get across?
What is the most appropriate way to give the information?

What does the patient want to know? Many of the things a patient will want to know are the same things that you or I would want to know if diagnosed with something previously unknown to us. The best way to find out exactly what to include is to speak to patients who have been diagnosed with the condition you are writing about. Ask them what they wanted to know when they were first diagnosed and what they wish they had been told. Box 1 shows a list of questions that someone may want addressed but won't always feel able to ask.

Box 1: What a patient is likely to want to know:

What is it?
Whay have I got it?
How will it affect me?
Can it be cured?
What happens next?
Might my family get it?

Most people will want to know "How will it affect me?" (Box 2)

What messages do medics want to convey?

A leaflet is a useful way of reminding patients about issues that they really need to know about but may forget. This may include advice on lifestyle changes or outlining how they can be involved with the future management of their condition. It is an opportunity to reinforce the things that are really important. For example, if regular monitoring is required, emphasising that in the leaflet reinforces the spoken advice given at the clinic or surgery.

What is the most appropriate way to give the information?

Making the information easy to understand and easy to digest is crucial in producing good patient information literature, just as it is in verbal communication. A simple way of estimating the readability your literature is the FOG (frequency of gobbledygook) index (box 3).³

As the test implies, short sentences and simple language are the key to making text easy to understand. Many leaflets for patients greatly overestimate people's comprehension, especially when it comes to technical terminology.² There are simple things that can be done to make it easier for information to be understood. These include:

Break down the information into small chunks - maybe by using sections or adopting a question and answer format

Begin by saying what information you plan to give, then give it, and then summarise it

Choose your words carefully. Technical terms are not necessarily taboo but if you use words that not everyone will understand, try to explain them more simply. For example, rectum (back passage), conjunctivitis (inflamed eye), radiotherapy (x ray treatment). Many people like to know the technical term for what is wrong with them as demonstrates that their problem is recognised by the medical profession.4 This also helps them to find further information if they wish

Try to be personal. Imagine you are writing for one individual rather than a large audience. Use terms such as "you" and "we" rather than "doctors" and "patients."

Deciding how much information to include is tricky. It is worth considering that not all patients want to know about prognosis, especially in serious conditions.⁵ If the leaflet is for use with all patients, then sticking to the basic questions mentioned above is probably best. It may be useful to provide sources of further information for those who want it. This could include websites, local support groups, or good books. Remember that many older patients will not have access to the internet. The leaflet should also state that such sources are independent of and not necessarily recommended by the hospital or organisation producing the leaflet.

When a patient is given a new diagnosis, it is important that this is quickly followed by a management plan. This applies as much in patient literature as in a face to face consultation. Above all else, a patient wants to know that whatever the diagnosis, they are not going to be left to confront it alone. The emphasis of any literature should be forward looking and explain what happens next. If there are options available, these might each be explained to give the patient the chance to consider them carefully before their next consultation.

Box 2: Aspects of a patient's life that may be affected by a new illness

Living arrangements
Employment
Hobbies
Diet
Driving
Sex life
Alcohol consumption
Benefits and compensation

What next?

The process of creating literature is a long one. When a draft has been produced, it should be shown to at least one expert in the field to assess the accuracy of its content. Then, if they approve, it needs to be shown to a sample group of patients to get their feedback. Many adjustments may have to be made before presenting the final draft to the patient liaison service, the department responsible for producing such literature at many hospitals.

Perhaps the most important thing to remember, as patient literature becomes more common is that it is not a substitute for spoken communication with the clinician. It may be wise to state that the doctor involved will be more than happy to answer any questions arising from reading the literature. Such information should be used to expand upon and reinforce what was said during the consultation, rather than to replace the need for a face to face explanation.

If you think there is a topic that would be well explained in a leaflet, try approaching a consultant in the field, or the patient liaison service at your local hospital. Not only do you learn a lot about the subject by producing a leaflet but also it will look good on your CV and say something about your attitude to patient care.

Richard Crane, fourth year medical student,

Bakula Patel, clinical lecturer in primary care, University of Nottingham
Email: mzyvrc1@nottingham.ac.uk

studentBMJ 2005;13:177-220 May ISSN 0966-6494

Parkin T, Skinner TC. Discrepancies between patient and professionals recall and perception of an outpatient consultation. Diabet Med 2003;20:909-14.
Bennet J, Bridger P. Communicating with patients. BMJ 1992;305:1294.
Ewles L, Simnett I. Promoting health: a practical guide. 4th ed. London: Scutari, 1999.
Abergavenny RD. Patients prefer "medical labels" to lay language, study finds. studentBMJ 2003;11:181.
Schattner A. What do patients really want to know? Q J Med 2002;95:135-6.