The usefulness of guidelines for patients

It has yet to be seen whether guidelines for patients are effective, say Dr Janet Hanley and Dr Brian McKinstry.

The set of guidelines for cardiovascular disease (CVD) from the Scottish Intercollegiate Guidelines Network (SIGN) includes guidelines for patients. These explain the conditions in lay language and detail what treatment patients can expect from professionals, as well as what they can do for themselves.

This development by SIGN brings them into line with NICE, where clinical guidelines issued since 2004 have been accompanied by information for the public.

Issuing guidelines to patients follows UK government health policy by increasing self-care and more patient involvement in treatment. However, the effectiveness of patient-held guidelines will depend on how they are used and how patients and healthcare providers respond to them.

Guideline trial
The impact of patient-held guidelines has not been widely evaluated.

In Edinburgh, we trialled a patient-held guideline for hypertension that we thought may be an effective way of improving BP control because of evidence that changing patients' expectations influences both the care provided and outcomes.

We found little difference in BP management between the guideline and control groups, but this did not mean that the guideline had no effect.

A limitation to this study was that we were required to provide a lot of patient information to recruit to the trial and this prompted many patients to visit the practice to have their BP checked before the trial started.

However, we know some patients used the guideline because they brought it to their appointments and they said they found it helpful.

We had been concerned that providing more information on cardiovascular risk to hypertensive patients could make them more anxious, but this did not happen. In fact there was a slight drop in anxiety levels two weeks after the guidelines were issued.

Our conclusion from the trial was that we need more research to determine whether this is a worthwhile use of resources.

A recent study showed that patients seeking health information on the internet tend to dismiss NHS and pharmaceutical company websites and prefer those with personal stories.

A potential way of increasing the level of trust in guidelines for patients would be for the GP or practice nurse to hand them out during consultations and clinics.

Practical concerns
There are practical considerations relating to patient-held guidelines.

Although described as a parent-held record rather than a guideline, the child health record is explicit about what families should expect of the NHS.

However, problems can occur when new versions are printed because some parents then have old versions.

The management recommended for most conditions changes from time to time and it is important that patients use an up-to-date guideline perhaps updated through a website.

Production and distribution of guidelines requires resources, and it is important to establish that this approach provides value for money.

Dr Hanley is senior research fellow at Napier University in Edinburgh and Dr McKinstry is senior research fellow in community health sciences at the University of Edinburgh


  • SIGN. CHD and stroke guidelines.
  • McKinstry B, Hanley J, Heaney D, McCloughan L, Elton R, Webb D J. Impact on hypertension control of a patient-held guideline: a randomised controlled trial. BJGP 2006; 56: 842-7.
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  • Roumie C L, Elasy T A, Greevy R et al. Improving BP control through provider education, provider alerts, and patient education: a cluster randomised trial. Ann Intern Med 2006; 145: 165-75.
  • Economic and Social Research Council. Bodies Online: Information and advice seeking in the health and fitness domain. Summaries/knowledge_communication_learning/ communication_information/index143.aspx?ComponentId= 17362&SourcePageId=11762
  • Thompson M, Gee S, Larson P, Kotz K, Northrop L. Health and loyalty promotion visits for new enrolees: results of a randomised controlled trial. Patient Educ Couns 2001; 42: 53-65.
  • Moss A L. Is the personal child health record used in secondary care? Child Care Health Dev 2005, 31: 627-8.

Key points

  • Guidelines promote increased self-care.
  • Patient guidelines on hypertension can reduce patient anxiety levels.
  • It is important that any patient guideline used is up-to-date.
  • The cost-effectiveness of patient-held guidelines is unknown.


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