Feature

What shall we tell the patients?

Do patients going into hospital for common surgical procedures get the information they need, when they need it? Christine Tucker and Angela Scriven find room for improvement

How disappointing to find that communication between hospitals and their patients is still as unsatisfactory now as it was 30 years ago.¹ The recent Audit Commission report reveals that, despite the advent of the Patient’s Charter and the rise of the patient as ‘consumer’, patients still have significant concerns about how information is given and received in hospitals.² Not only are patients frequently given too little information, but that which is available is likely to be of poor quality (badly written, for example) or presented at the wrong time.

This article is a preliminary report on a national survey which concentrates upon the management and quality of written information currently distributed to patients prior to, and during, their hospital stay. The study is specifically focused upon the information needs of one particular patient group, women undergoing hysterectomy. The rationale behind investigating the written information available from hospitals for this group of patients is twofold. First, the need for better written information for patients has been explicitly recognised by the Audit Commission. Second, a body of significant research is available which examines the information needs of hysterectomy patients. So it is possible to compare the type and management of the written information currently available with research findings which detail the information needs of women who undergo hysterectomy.

There is ample evidence to show that written information, while not adequate on its own, is of significant help to patients who want to understand what is happening to them during their stay in hospital, and afterwards during the recovery period.

The well-established finding reiterated by the Audit Commission that patients frequently desire more information about clinical matters than they are able to obtain, sits uneasily with the observation that patients often forget what their doctors tell them within a fairly short period of time. The availability of good written information could fill an important gap for those people who find listening and remembering difficult during hospital visits and surgical procedures. A further advantage of written information is that people who cope best by not knowing too much about their condition can choose how much or how little they refer to the available literature.

In our survey, a representative sample of 130 English hospitals were asked to provide copies of the literature which they have available to women undergoing hysterectomy. One hundred hospitals replied and sent 184 leaflets between them. A general overview of the literature indicates a huge variation in both the quality and quantity of written information available to patients. Some hospitals provide one leaflet which covers everything from deciding to have the operation to convalescence at home. Others present up to five leaflets which discuss various aspects of having a hysterectomy.

A small proportion of the leaflets (27; 15 per cent) produced by hospitals are professionally printed. The great majority (131; 71 per cent) are basic copies of typed text, sometimes on headed note paper, indicating the hospital’s name and telephone number, but the majority on plain paper. The rest (26 leaflets; 14 per cent) are photocopies of commercially produced handouts from health information groups.

Although the majority of hospitals produce literature of a reasonable typographic quality, 27 hospitals appear to be giving their patients literature which is virtually unreadable. Blurred printing, small print or faint ink rendered some leaflets useless. A number of photocopies were not straight on the page, resulting in the loss of some script; there were photocopies of photocopies and diagrams and illustrations showing up as black blobs, any detail having long since disappeared. But these problems are relatively easy to put right.

A review of the literature about leaflet production describes easy to follow criteria which enhance the readability and presentation of information.³ Written material produced ‘in-house’ by 80 per cent of the hospitals does not follow these guidelines. In the main the ‘leaflets’ present patients with close-typed blocks of text.

It is clear, and the Audit Commission makes this point, that cost is very influential in hospitals’ decisions regarding what they provide for patients. But handing out unreadable pieces of paper cannot be equated with cost efficiency. On a brighter note, it is encouraging to find that 14 hospitals are presently preparing new leaflets. At least five of these are being produced by nursing staff on further education courses, although it is to be hoped that there will be ‘professional advice on layout, design and content’ as recommended by the Audit Commission.

There is more to producing a useful leaflet than making it look attractive. The well-designed leaflet must contain information which is relevant to the patient, providing answers to common questions as well as giving accurate, easy-to-follow clinical details. The author has to balance clinical knowledge with more down to earth (possibly personal) experience of what it might be like to undergo a hysterectomy. So who is writing these important documents, and what are their sources of information?

The figures from this survey show that 58 per cent of the leaflets produced ‘in-house’ by hospitals are written by nursing staff. While nurses are very well placed to give information about the early stages of recovery, based on their clinical experience, they may not possess adequate knowledge about the later stages of convalescence. It is particularly important for hysterectomy patients, many of whom experience symptoms related to their operation some time after surgery, that they are advised what might be a normal response by women who have experienced the operation themselves. A surprisingly low percentage of citations (14 per cent) refer to past hysterectomy patients as a source of information regarding what women need to know about the operation and recovery period. This may be set to change since the Audit Commission specifically recommends consulting patient self-help groups to tailor information to the patient.

Another of the Audit Commission’s concerns about written information is the timing of its dissemination. The results from this survey indicate that 46 per cent of hospitals give written information to patients either on admission or post-operatively, despite research findings indicating that most women require the information before hospitalisation. One hospital in this survey gives out a comprehensive booklet the day before the operation or ‘any time before discharge’. But it covers the decision to undergo hysterectomy, the operation itself, and post-operative and convalescence care. It will be too late for much of the useful information within it to be helpful.⁴

What do patients think about the literature provided for them? Only 49 per cent of hospitals knew of any work which had asked for patients’ views about the information booklets. Those hospitals which had undertaken a survey used variable methods. Some evaluations were simply patients’ comments as they left the ward. Other questionnaire type surveys involved very small samples: two hospitals had used samples of 10 patients, one hospital had used a sample of 12. The question of when women are asked how helpful the literature has been is also significant. There is no indication from any of the hospitals that past hysterectomy patients had been involved in evaluative studies. Women’s views on what they need to know about the recovery from hysterectomy are likely to change over time. It is only in retrospect that many of them will know how useful the hospital information has been.

Overall, it appears that an evaluation specific to the literature on offer has not been a priority and most printed material is being disseminated with an assumption of its usefulness — an assumption which should be questioned.

The quality of written information for patients is given a relatively low priority by hospitals. Its production and dissemination are somewhat ad hoc, and it is not clear that the value of the available literature has been assessed. It is evident that nursing and medical staff often do not have the time, expertise or resources to produce appropriate information leaflets. Given the research which has shown the very great need for patients to be provided with more information, it is important that hospitals improve their performance in this area.