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Shared decision aids

In this article Dr Theresa Hinde, an anaesthetic fellow at Torbay and Southern Devon Health and Care NHS Trust, introduces several national and international aids used in shared decision making.

Some health and treatment decisions do not have a single best choice. In these circumstances, patients need help to decide what is the best choice for them based on:

  • The best available evidence
  • Their own values and preferences.

Decision aids are designed to supplement, not replace, clinician counselling and should make it easier for patients and healthcare professionals to discuss treatment options.

A good decision aid will improve the likelihood that the patient’s choice is based on the things that the patient felt mattered the most to them.

What are they?

After a rapid proliferation of decision aids from 1999, the International Patient Decision Aids Standards (IPDAS) collaboration was formed to assess the quality of decision aids and to help standardisation. [1] They produced the following definition of decision aids:

“evidence based tools designed to prepare clients to participate in making specific and dedicated choices among healthcare options.”

The best available evidence

Evidence should be provided in a clear manner to help patients understand more about the health problem and treatment options and may include information about:

  • The health condition including the prognosis with or without treatment
  • Options: all the treatment or self-management possibilities
  • Benefits and harms from all the options
  • Any uncertainty in the evidence or the outcomes.

Patient feedback has suggested that decision aids help them to convey more confidently their healthcare preferences to clinicians, family and friends.

Ways to evaluate their own values and preferences

The aid should help to clarify values i.e. what benefits, harms and uncertainties are most important to the individual patient. The patient should be guided through the steps of decision making. Good decision aids should help a patient to imagine what it could be like to experience physical, social and emotional effects of the different options.

Illustrations such as patient stories may be useful to help to describe personal experiences of the benefits and side effects of different options. This is going to be absolutely key to helping the patient make the best decision for themselves, for example, in a patient who has osteoarthrosis of the knee, is a high level of mobility or reducing pain to a minimum more important than avoiding perioperative risks or a lengthy recovery from treatment. Expectations and the likely reality need to be explored, clarified and discussed during a face-to–face encounter with a healthcare professional.

Timing

Decision aids can be used at different times in a patient’s pathway. For most impact, decision aids should be reviewed in a patient’s own time after a diagnosis has been made but before returning to a clinic to discuss treatment preferences and definitive therapies e.g. consideration of options for treatment of osteoarthritis of the hip is best undertaken before seeing an orthopaedic surgeon. Once in the clinic, the aids can help to guide the clinical conversation around best options for the individual.

Interface

The way in which the patient interacts with the decision aid is important and can vary in complexity. Due to different patient needs, they need to be available in a variety of media e.g. paper based (one page information sheet or detailed leaflets) or as electronic options (available on mobiles, portable devices and computers).

More sophisticated interactive web based tools exist which have the advantage of tailoring information according to the user. Some websites allow patients to access only the level of information and detail that they choose. This format can allow information to be saved and updated and enables the patient to share information easily with others if they choose.

The presentation of options in tables with ‘headline outcomes’ is a popular format. Example of these can be seen at Option Grid Decision Aids.

The NHS has commissioned the development of a collection of decision aids via NHS Right Care, several of which relate to operative procedures. The website is currently undergoing a mass transformation and updates on the decision aids can be found here.

An example of the shared decision aids pathway is shown below.

Provision needs to be made for patients with difficulty in reading, medical literacy, language barriers or limited access to computers. There may be a need for a family member, friend or health coach to take a patient through the decision aid.

Communicating risk

Explanation of risk is key to an effective decision aid. This can be difficult to achieve. A Cochrane review of shared decision aids concluded that improved knowledge of risks and likely outcomes led to more accurate risk perceptions, especially if the decision aid expressed probabilities in numbers. [2]

This can be further explored in face-to-face clinics using tools such as survival and risk calculators to help personalise an individual’s risk. These tools take into account individuals attributes and may benefit for additional power of including data collected from clinical tests e.g. blood tests, cardiopulmonary exercise testing.

As an example, one group of perioperative physicians developed a survival calculator for patients considering abdominal aortic aneurysm surgery that uses variables available before surgery against observed survival following scheduled repair of abdominal aortic aneurysms. [3] They concluded that the survival calculator should be used to inform patients considering whether or not to proceed to scheduled repair of an abdominal aortic aneurysm and that it might also be used for men considering screening for abdominal aortic aneurysm.

Evidence behind aids

There is accumulating evidence behind the use of decision aids. A Cochrane review concluded the following: [2]

High-quality evidence that shared decision aids: - Improve people's knowledge regarding options
- Reduce their decisional conflict related to feeling uninformed and unclear about their personal values
Moderate quality evidence that shared decision aids: - Stimulate people to take a more active role in decision making
- Improve accurate risk perceptions when probabilities are included in decision aids, compared to not being included
Low quality evidence that shared decision aids: - Improve congruence between the chosen option and the patient's values
Further evidence that shared decision aids: - Enable more informed, values-based choices
- Improve patient-practitioner communication
A variable effect that shared decision aids: Reduce the number of people choosing discretionary surgery
There are no apparent adverse effects on: Health outcomes or satisfaction
There is a need for further evaluation of: The effects on adherence with the chosen option, cost-effectiveness, use with lower literacy populations, and level of detail needed in decision aids
Little is known about: The detail that decision aids need in order to have a positive effect on attributes of the choise made, or the decision-makinf process

Embedding their use

To make decision aids part of routine clinical practice, it is probably not enough just to make aids available. They need to be embedded in IT or decision support systems, and signposted so that clinicians are encouraged to use them. They should be included in training programmes for healthcare professionals and their development should include input from both patients and clinicians.

Several initiatives with useful information exist, and these include the NHS Right Care and The Health Foundations MAGIC.

Conclusions

Well-designed decision aids may help patients to make high quality, personalised decisions. They cannot achieve this in isolation, but they can help to improve communication between patients and clinicians in face-to face encounters by initiating a conversation.

Many decision aids exist and there is a quality framework and criteria established to for those who design them. Patients and clinicians should be encouraged to embrace their use and for greater impact, they should be embedded in clinical systems.


References

  1. International Patient Decision Aid Standards Collaboration

  2. Stacey D, Légaré F, Col NF, Bennett CL, Barry MJ, Eden KB, Holmes-Rovner M, Llewellyn-Thomas H, Lyddiatt A, Thomson R, Trevena L, Wu JHC. Decision aids for people facing health treatment or screening decisions. Cochrane Database of Systematic Reviews 2014, Issue 1

  3. Carlisle, J. B., Danjoux, G., Kerr, K., Snowden, C. and Swart, M. (2015), Validation of long-term survival prediction for scheduled abdominal aortic aneurysm repair with an independent calculator using only pre-operative variables. Anaesthesia, 70: 654– 665

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This article is from the free online course:

Perioperative Medicine in Action

UCL (University College London)