The problem
Existing osteoporosis medicines are proven to be effective at preventing fractures. However poor adherence (the extent to which a patient’s action matches the agreed medicine recommendations) has been recognised internationally by experts as a major challenge in the treatment of osteoporosis. Medicine non-adherence is associated with increased risk of fractures.
ROS’s own 2021 Living with Osteoporosis study gathering responses from over 3,000 people in the UK revealed that 60% of people are not confident they’re taking the right medicine. Poor adherence is complex and relates to a combination of fear of side-effects, beliefs about medicines not being necessary or doubts about effectiveness. All of these factors are compounded by an absence of monitoring and follow-up, such that after the initial prescription, many people are effectively discharged from ongoing care for their osteoporosis.
The solution
By finding the best way to meet information needs, share decision-making and provide follow-up, at the key points within a patient’s treatment journey, we can help to significantly reduce the risk of broken bones and the devastating consequences.
My GP just said I have osteoporosis and she will get a prescription ready for collection. There was no information, no guidance and all information I received was through my own research via the Royal Osteoporosis Society and a support group on the internet... I felt very scared and abandoned at the time.
Recently completed projects
Principal Investigators: Dr Laurna Bullock and Professor Zoe Paskins, Keele University
Timescales: July 2022 – January 2025
Amount: £62,627
Summary: Osteoporosis is diagnosed by a bone density (DXA) scan, which calculates how dense your bones are. Understanding your own DXA result is of critical importance in understanding your own risk of fracture and to inform decision making about medicines. However, patients and clinicians report uncertainty about the purpose of DXA scans, difficulty understanding results (described using ‘T scores’, ‘Z scores’ and terms such as osteopenia), and clinicians report difficulty in being able to explain results. This uncertainty may reduce the chance of someone being prescribed, or deciding to take medicines that could help reduce their risk of a broken bone. This research aims to understand what patients, GPs and other healthcare professionals (HCPs) think the purpose of DXA scans are, what their results mean to them, and how this affects their understanding and actions. We will do this by interviewing GPs and HCPs who refer patients for DXA and receive DXA results and patients who have recently had a DXA scan. We will use a group of osteoporosis experts, GPs and patients to use the results to create new resources to increase understanding. We will seek further funding to see if these improve treatment uptake.
Principal Investigator: Professor Andrew Sturrock, Northumbria University
Timescales: April 2023 – April 2025
Amount: £88,387
Summary: Problem: There is no standard practice for following up patients with osteoporosis. Patients have reported this as a problem, because of ongoing needs. Medicines optimisation is a term used to describe a person-centred approach to safe and effective medicines use, helping people obtain the best possible outcomes from their medicine. Aim: To develop a pharmacist follow-up review in general practice to support person-centred care and medicines optimisation for people on osteoporosis medicines. Methods: We will co-design the review with patients and healthcare professionals. We will use findings from a literature review of interventions that support patients to feel informed and adhere to osteoporosis medicines which members of this group have undertaken on behalf of the ROS Bone Research Academy. The review will also be informed by an existing ROS-funded training and decision support tool (iFraP), developed for use in Fracture Liaison Services when people start medicines. We will use focus groups and a series of co-design workshops with patients and healthcare professionals to explore how, where and when the review should be delivered and how to adapt and build on the existing iFraP resources and the training needs for pharmacists to undertake the new review.
