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How nurses can develop good patient information leaflets

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Every team developing patient information needs an expert with knowledge of customary procedures, practices and protocols. However, patients’ information needs may not be satisfied by what experts decide to tell them. Such teams also need members who are not afraid to challenge the way information is expressed and ask for more clarity and ease of understanding.

Abstract

 

VOL: 99, ISSUE: 21, PAGE NO: 26

Alison Turnbull, BSc, is a freelance editor and author of Plain Words for Nurses, published by the Foundation of Nursing Studies

 

 

Every team developing patient information needs an expert with knowledge of customary procedures, practices and protocols. However, patients’ information needs may not be satisfied by what experts decide to tell them. Such teams also need members who are not afraid to challenge the way information is expressed and ask for more clarity and ease of understanding.

 


 

Six elements make a good patient information leaflet:

 


 

- Listening to patients;

 


 

- Clear purpose;

 


 

- Good information;

 


 

- Clear writing;

 


 

- Improved readability;

 


 

- Eliminating fear.

 


 

Listening to patients

 


 

When you develop a leaflet, your first step is to gather people who have experienced the condition you plan to write about. They may be patients, carers, or family members. The people you invite may have been treated at your clinic or they may be local members of a national support group.

 


 

Some may have had negative experiences and be keen that future patients do not have the same problems. They are as important as the people who are happy with the way they were treated. You will need to chair the discussion very tightly so that every voice is heard.

 


 

Ask your group to write down all the questions they think will need to be answered in the leaflet. In a study of 62 patients and 28 specialists that reviewed 54 items of patient information, leaflets, videos and audiotapes, Coulter et al (1998) found that patients want to understand the causes of the problem and their treatment options. They also found that patients want to know about things they can do to help themselves and that they want balanced information about risks as well as benefits.

 


 

Clear purpose

 


 

You will need to ask the members of your discussion group to consider:

 


 

- What information the leaflet needs to focus on;

 


 

- When the patient will read the information.

 


 

For patients reading the leaflet in the early stages of a condition, you may need to focus on symptoms. After diagnosis you will focus on treatment options. For example, patients with prostatic hyperplasia do not need to be told they can expect problems when urinating: they already know. They want to know what is causing the problem and how it can be treated;

 


 

- Who will read the leaflet. Is it for the patient, or the patient’s carer, child or parent? How will you address them and how will you refer to the patient?

 


 

You may need written information to back up what you have told the patient in person. This will tell him or her more about the condition, and the risks and benefits of the various treatment options. You can direct patients to further information about the condition or put them in touch with other people who have experienced it.

 


 

Whatever your focus, write it down and make sure that everyone who is contributing to your leaflet is working towards the same goals.

 


 

Good information

 


 

Once your patients have set out a list of questions it is time to call in the experts to answer them. Patients want a balanced discussion of the risks and benefits of all the options they are likely to read about.

 


 

Cover all the ground, including no treatment, complementary therapies and even that miracle cure they read about in the tabloids last week. Remember the maxim ‘a little knowledge is a dangerous thing’.

 


 

For ways to assess the quality of your information, you might like to look at the resources provided by the Centre for Health Information Quality and DISCERN. See ‘Online resources and training’.

 


 

Suggest to the experts that they use a conversational tone as if the patient were there in person. Some can do this with ease but other health professionals feel the need to write in a pompous and impersonal style.

 


 

Clear writing

 


 

Run a check on readability before you take your answered questions back to your patient group. Most word processing software allows you to check spelling and grammar, and will also provide readability statistics.

 


 

Readability scores are usually calculated on the number of words in a sentence and the average number of syllables per word. The Flesch-Kincaid Grade Level Score rates text on a US grade-school level. For example, a score of 8.0 means that an eighth-grader (13-year-old) can understand the document. For patient information leaflets aim for a score of less than 10. The Flesch Reading Ease Score rates text on a 100-point scale - the higher the score, the easier it is to understand. Aim for a score above 60 in patient information leaflets.

 


 

If your document has reached these targets you have little work to do. If not, then put aside some time to edit the document before you show the answers to your patient group.

 


 

Improved readability

 


 

Shorten your sentences

 


 

Think about ‘one idea, one sentence’. The words ‘and’, ‘but’, ‘together with’ and ‘also’ often link unconnected ideas. So do commas, brackets, semicolons and dashes.

 


 

Read the words out loud to yourself in front of a mirror Do they sound stuffy and formal? Better still, read them out loud to someone else.

 


 

Shorten your words

 


 

In patient information you will have long, technical words that you cannot shorten. There is no other way to say transurethral resection of the prostate except to call it TURP after the first mention. You can make these important words shine out by using fewer syllables in your other words. For example the sentence: ‘Write as you speak’ has four syllables and a reading ease of 76.5, whereas: ‘Communicate in a conversational manner’ has 13 syllables and a reading ease of zero.
Cut out redundant words A redundant word or phrase is one that does not not change the sentence if you take it away. For example, we do not need to say ‘in actual fact’ - facts are actual.

 


 

We sometimes use too many words that denote time. My least favourite ‘ongoing audit cycle’ has two redundant words because audit is both continuous and cyclical. In ‘this will happen in the future’ the verb is already in the future tense and therefore ‘the future’ is redundant.

 


 

We also use ‘ability’ words too often. For example using the phrase: ‘If it is not possible for you to come to clinic’ when ‘If you can’t come’ will do.

 


 

Turn nouns into verbs

 


 

Many nouns that need extra words around them to make sense can be replaced with verbs. ‘Give consideration to’ has seven syllables. You can save words and syllables by identifying the verb and rewriting the sentence with just one one verb in it. ‘Think about’ means the same, and only has three syllables, so does ‘consider’.

 


 

Suffixes show that a verb has been turned into a noun:

 


 

- -tion (consideration = think about, consider);

 


 

- -sion (provision = provide, give);

 


 

- -ment (development = develop);

 


 

- -ance (maintenance = maintain, keep);

 


 

- -ness (practise assertiveness = assert yourself).

 


 

Use active verbs

 


 

In an active sentence, the doer (subject) does something (verb) to someone or something else (object). In a passive sentence the object has something done to it by the subject. Active sentences are more personal and less stuffy. ‘We will book you an ambulance or taxi if you need it’ is friendlier than: ‘On discharge, transport will be arranged if it is necessary’.

 


 

To find passive sentences, look out for variations on the verb ‘to be’ - am, are, is, being, been, was, were, will be.

 


 

When you use ‘we’ make it clear who the ‘we’ refers to. You can do this by giving the names and responsibilities of the care team in a box on the leaflet.

 


 

Explain the big words

 


 

The best way to do this is to ask people who have the condition how they describe it. Explain unfamiliar clinical terms in a box. Use abbreviations only after you have spelt out the words. Consult your patient group if you need explanatory diagrams.

 


 

Eliminating fear

 


 

Coulter et al (1998) recommend language that is ‘reassuring and non-alarmist’.

 


 

You can do this by avoiding the negative words ‘no’, ‘not’, ‘non’, ‘nothing’, ‘but’, ‘though’, ‘however’, and the prefixes ‘un-‘, ‘im-’ and ‘in-‘.

 


 

Reassurance can go too far in the opposite direction and may be too vague; ‘just a little’ to you may mean a huge amount to your patient. In one of my workshops we looked at the sentence ‘a small telescope will be inserted into your penis’. The two men in the room sat with legs crossed and tears in their eyes. ‘I don’t care how small the telescope is,’ said one. ‘If you are putting it there, it may as well be the Jodrell Bank Observatory.’

 


 

Make use of online resources and training

 


 

The College of Health is a national charity that represents the interests of patients and promotes greater user involvement in health and social care. The Patient Involvement Unit of the College of Health provides independent advice and support to the National Institute for Clinical Excellence. See: www.collegeofhealth.org.uk

 


 

- Short courses on effective writing and editing skills for health professionals are at: www.timalbert.co.uk

 


 

- Training on the use of plain English can be found at: www.plainenglish.co.uk/training.html

 


 

- The Centre for Health Information Quality assesses information sources, networks with providers of health information and trains producers, reviewers and communicators of health information: www.hfht.org/chiq

 


 

- DISCERN helps users of consumer health information judge the quality of written information about treatment choices: www.discern.org.uk

 


 

Conclusion

 


 

Whatever your perspective, you cannot write a leaflet without testing it on others. Producing good patient information is a team effort between professionals and patients. Involve your patients, set clear goals and provide the very best information. Then present the information as clearly and positively as you can. It is a long, but satisfying, process.
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