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In September 2017, the National Institute for Health and Care Excellence (NICE) published a clinical guideline for the diagnosis and management of endometriosis.1 Accompanying the guideline for this complex and variable condition is a patient decision aid (PDA) that was developed by a group of clinicians, patients and a representative from Endometriosis UK. The PDA has been designed for patients to work through with a healthcare professional and covers symptom relief, contraceptive reliability, practicalities of treatment, effect on periods, as well as providing advice on stopping treatment, information about planning pregnancy and details of the risk of deep vein thrombosis and breast cancer. There is an accompanying guide for clinicians that expands upon the evidence behind the decision aid and advises on its use.
The NICE guideline on the management of sinusitis, published in October 2017, is supported by information for the public on the harms and benefits of treatment.2 This includes a visual aid that illustrates information from a study that looked at what happened to people who took antibiotics for sinusitis and what happened to people who didn’t. At a glance it is possible to see that the chances of an antibiotic helping symptoms are about the same as the chances of getting an adverse effect.
These are welcome additions to the library of decision aids and information for patients that accompany NICE guidance. Others already published support patients in making shared decisions on drug choices for atrial fibrillation, coronary heart disease, type 2 diabetes and osteoporosis. Guideline recommendations either tend to be binary and unhelpful, or difficult to apply to an individual – particularly where choices are complex or the evidence is unclear. The production of decision aids, meaningfully involving patients and their representatives, encourages the provision of the type of information that people really care about and supports the process of shared decision making. Although evidence that PDAs influence clinical outcomes is limited, they encourage more active involvement in treatment decisions and have been shown to help patients feel more knowledgeable, better informed and clearer about their values.3
Shared decision making is appropriate for many aspects of healthcare, including whether to undergo screening or a diagnostic test; whether to undergo a medical or surgical procedure; whether to participate in a self-management programme; whether to take medication; and whether to attempt a lifestyle change.4,5 However, knowing which guidelines include PDAs and other information that supports the process of shared decision making is not always straightforward or easy. NICE has published more than 1,400 guidance documents on its website and yet only 13 patient decision aids are listed.7 The more that can be done to encourage guideline developers to develop patient decision aids as a routine component of their output, the better. The next challenge is to make sure that they are used.6
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