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logo - Pegasus Health (Charitable) LtdStudent: Georgina Allison
Supervisors: Dr Ben Hudson, Dr Pip Mason [Pegasus]
Sponsor: Pegasus Health

Lay Report

Background

Osteoporosis is a disorder of the bones that affects men and women as they age. It is characterised by weakening of the bones, they are therefore more likely to break after even a small injury. This explains the increased risk of hip fractures in osteoporosis.
Alendronate is a preventative medication that reduces one's chance of getting fractures by slowing the breakdown of bone and increasing bone strength. The decision to take alendronate is difficult however, as patients need to weigh up their individual benefits against the risks, which are some side effects. Thus there is a need for a decision aid to help people to make a decision that aligns with their individual risks and priorities in life. This project involves designing and piloting both a decision aid and a measure of informed choice, which will be used to assess the decision aid. It is intended that the decision aid and measure of informed choice will be used in a randomised control trial comparing the quality of the decision with the tool against standard care.

Aims

  1. To develop a decision aid for patients considering medication for hip fracture prevention in osteoporosis
  2. To develop a measure of informed choice which will be used to assess the effect of the decision aid on patients' ability to make an informed choice regarding their use of fracture prevention medication
  3. To pilot the decision aid and the measure of informed choice with a small group of 10-20 patients and GPs.

Method

We developed the decision aid and measure of informed choice, and then piloted both with 20 participants. Each participant worked through the decision aid, getting their individual hip fracture risk calculated and then rating the benefits and drawbacks of taking alendronate. They made a decision about whether or not to take alendronate, and then worked through the measure of informed choice. They were then asked to give verbal feedback on the process. Results and feedback were recorded and analysed, and changes were recommended as an account of these findings for future use of the tools.

Results

Of the 20 participants, 60% declined to take alendronate, 15% were undecided and 25% said yes to taking alendronate. As a trend through the group, they placed great importance on avoiding hip fractures, maintaining mobility, avoiding the common and uncommon side effects associated with alendronate. There was a very high performance by participants in the knowledge test, with 94% of questions in true false section answered correctly, and 90% of participants recalling their individual risks correctly. This indicates that they had sufficient information to make an informed choice. Participants rated the strength of their decision very highly, when asked to evaluate the decision, 93.8% of the responses were positive. The question that had the least positive response was 'This decision was easy for me to make', of which 70% answered positively. This shows that there is still room for improvement for the decision aid to facilitate a clear decision. Verbal feedback and observations during trialling have contributed to a comprehensive list of suggested changes for future use of both the decision aid and measure of informed choice.

Conclusion

Participant feedback showed they found the decision aid very helpful in deciding whether or not they would take alendronate. This was supported by their positive ratings in their evaluation of the strength of their decision. A common theme to the feedback was that 'this process is very useful and should be used for other medications too'. Participants really appreciated being so involved in the treatment decision; this shows how there is a definite place for decision aids to facilitate similar decisions in general practice.

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