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Treatment according to guidelines
I just want the protocol, doctor!
  1. E McColl
  1. Correspondence to:
 Elaine McColl
 Director, Newcastle Clinical Trials Unit, School of Population and Health Sciences, University of Newcastle upon Tyne, Newcastle upon Tyne NE2 4AA, UK;

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It may not be easy for patients to insist on treatment as part of a guideline protocol

Some years ago I was diagnosed with chronic open angle glaucoma. Initial treatment involved laser therapy with a daily regimen of eye drops since then. At this year’s review visit I was told that my intraocular pressure was once again raised and that other treatment options, including surgery and/or long term treatment with drugs with unpleasant side effects, might be required. As an informed consumer of health care and an advocate of evidence based medicine, I decided to search for guidelines and protocols on the management of my condition.

A search of the NICE website ( found nothing of relevance. However, a visit to the National Guidelines Clearing House ( soon led me to the American Optometric Association’s clinical practice guideline on the care of the patient with open angle glaucoma.1 I was slightly concerned to read in the opening pages of this document that “clinicians should not rely on this clinical guideline alone for patient care and management” but should instead refer to the cited references and sources for a more detailed treatment of the evidence. Could I be sure that my ophthalmologist and ophthalmic surgeon would have chased up this additional material? Did I personally need to access some or all of the almost 600 references in order to make an informed choice about my treatment? Indeed, was the guideline actually relevant to my current dilemma at all? Reading further, I found that it is addressed primarily to optometrists rather than to those providing therapeutic interventions, though the role of the optometrist in informing and educating patients about treatment options and the potential adverse effects of treatment options is addressed.

A further source of concern for me was the lack of a lay or consumer summary of this very comprehensive guideline. Although I have been involved in health services research for over 20 years, I am not clinically qualified. The specialist terminology and language used in this document render it difficult for me to understand without recourse to a medical dictionary. Furthermore, there is no evidence of consumer involvement in the development of this guideline, with the result that there is scant reflection of the patient’s perspective and experience of the condition and its management. We are told that patient adherence to treatment regimens is frequently poor, often because of unpleasant side effects of topical and oral drugs, but the cited references are in many cases over 20 years old.2 The NICE guideline development process requires that viewpoints of patients and their carers be taken into account, and all NICE guideline development groups have consumer representatives. A recent report from NICE3 highlighted the unique and essential nature of these representatives’ contribution to the guideline development process.

Elsewhere in this issue, West and colleagues4 report on the comparison of patients with pre-eclampsia who were enrolled in a clinical trial, and a control group of non-participants with the same condition who were nonetheless managed according to a strict treatment protocol. It has often been argued that patients opt to participate in trials in the hope that they will receive treatment options unavailable in routine practice, or will at least benefit from higher quality of care because of the rigorous study protocols applied to trial participants.5 However, West and colleagues found no differences in clinical outcomes and only minor differences with respect to the process of care between the two groups. They conclude that “in routine practice, patients may be well advised to insist on treatment as part of a protocol”.

My own experience in trying to find a guideline appropriate to the management of my particular health problem suggests that this may not be as straightforward or as simple a process as these authors imply! Are appropriate guidelines always available and accessible? How well equipped are the majority of patients to find and appraise such guidelines? Will the patient perspective have been adequately captured in the guideline development process? Will clinicians be aware of the guidelines and will they be willing to accede to patient requests for protocol driven treatment? Undoubtedly, as West and colleagues conclude, and as the NICE initiative on protocol based care ( indicates, guidelines have enormous potential to ensure the quality, safety and effectiveness of health care. Encouraging professionals and patients to realise that potential remains a challenge for all of us.

It may not be easy for patients to insist on treatment as part of a guideline protocol