Engaging patients and public: awareness, activation and self‑management
Wider awareness and understanding of osteoporosis and fragility fractures would empower people to recognise risk factors and manage their own bone health.
Five things you need to know
- People need to understand their own risk of osteoporosis and fragility fractures so they can access timely diagnosis and care.1 2
- Misconceptions are common – even people at high risk often underestimate the seriousness of osteoporosis and the danger of fragility fractures.2-4
- Lack of knowledge leads many people with osteoporosis to discontinue treatment, which is a huge barrier to improving bone health.2 5
- Public awareness campaigns and patient/professional associations across Europe have been fighting for the recognition of osteoporosis as a serious condition.1 6-9
- Policymakers must ensure people are given clear information about fragility fracture prevention to enable them to maintain bone health and reduce their risk of sustaining a fracture.
What is it and why is it important?
It can be quite a shock to find out that you have osteoporosis, especially if you haven’t had a fracture yet. It can be difficult to understand where it is coming from and it might mean you need to make quite a few changes to your life to manage your risk factors.
PAULIINA TAMMINEN, FINNISH OSTEOPOROSIS ASSOCIATION
People who have never had a fragility fracture will not usually be assessed for fracture risk unless they themselves, or their health or social care professional, note the presence of key risk factors. Wider awareness of the risk factors for osteoporosis and related fractures – as well as greater understanding of the potential consequences of leaving osteoporosis untreated – would empower more people to seek early diagnosis and treatment.10 This may be particularly important for men, in whom risk of osteoporosis is often underestimated.2 11 Men who sustain a hip fracture are less likely than women to receive osteoporosis medication to prevent subsequent fractures.12
People with osteoporosis can reduce their risk of fracture by actively engaging with their own care. This can involve changes to lifestyle and the living environment, and continuing to take prescribed medication.13 Offering care that responds to people’s preferences is also essential to improving outcomes. It is thus crucial that therapy is adapted to people’s individual care needs.1
The population at risk of fragility fractures is diverse, and this can contribute to differences in medication use. An international review found that personal factors such as age, education and the presence of other long-term conditions, as well as systemic factors such as national insurance and co-payments, contribute to variation in the likelihood of people continuing to take osteoporosis medication.14
A huge part of the responsibility for managing osteoporosis lies with the patient – we need to make sure they have all the information and resources they need to successfully reduce their risk of sustaining a fragility fracture.
PENILLA GUNTHER, FORMER MP, SWEDEN
How do we know it works?
Improved public education and awareness can help people identify and manage osteoporosis.10 14 Comprehensive management programmes that include education can support increased investigation of osteoporosis. Once osteoporosis has been diagnosed, patient education programmes may encourage more people to stay on treatment.15
Treatment plans should be tailored to the individual – this will help people to maintain lifestyle changes and continue taking medication. In addition to a bone-healthy diet and exercise, there are several pharmacological treatment options for osteoporosis, ranging from daily tablets to annual injections, and it has been shown that less frequent dosing makes people more likely to continue taking their medication.1 14 Research has found that age and the presence of other chronic conditions had an impact on the extent to which people continued to take their medication as prescribed.14 It is important that people are prescribed the most appropriate option for them, and that this is determined based on shared decision-making between patient and clinician.1
Autonomy is very important to older people. It’s not about telling them that they can live longer, but if we tell them they will be able to walk without pain for longer, that can make a real difference.
DIDIER POIVRET, CENTRE HOSPITALIER REGIONAL METZ-THIONVILLE, FRANCE
What is the current situation?
The general population tends to be either misinformed or unaware of osteoporosis and its associated fracture risk. Osteoporosis is often wrongly viewed as a natural consequence of ageing that cannot be averted.5 Even people at high risk or already diagnosed with osteoporosis may frequently underestimate the danger of sustaining a fracture.5 As a result, people at risk of fracture may not be detected or be given treatment until a fracture occurs.
Inaccurate information in the media may contribute to low prioritisation of osteoporosis and misconceptions about treatment safety.2 3 It has been noted that some people neglect to take their osteoporosis medication due to fear of some side effects, despite these being rare.4
In some countries, civil society is engaged in raising awareness of osteoporosis and fragility fracture risk to address misconceptions and general low levels of understanding around osteoporosis.1
Organisations including the Research and Information Group on Osteoporosis in France,7 the Spanish Association for Osteoporosis and Osteoarthritis8 and the UK’s Royal Osteoporosis Society6 aim to raise awareness of osteoporosis and produce resources such as posters and leaflets. The International Osteoporosis Foundation offers resources including patient stories and an osteoporosis risk check for self-assessment.16 Its website features related events and campaigns, including World Osteoporosis Day.
What needs to be done?
Awareness of osteoporosis and fragility fractures as a serious health concern must be improved. Governments should expand and support existing awareness efforts, which are primarily led by civil society organisations. Campaigns should be used to debunk myths and clearly outline the personal cost of inaction.
Policymakers must prioritise the delivery of person-centred care. This type of care tailors risk-reducing treatment to an individual’s circumstances to ensure patient satisfaction and support people to continue treatment and maintain lifestyle changes in the long term.
Date of preparation: October 2020.
- Harvey NC, McCloskey EV, Mitchell PJ, et al. 2017. Mind the (treatment) gap: a global perspective on current and future strategies for prevention of fragility fractures. Osteoporos Int 28(5): 1507-29
- Cipriani C, Pepe J, Minisola S, et al. 2018. Adverse effects of media reports on the treatment of osteoporosis. J Endocrinol Invest 41(12): 1359-64
- Curtis EM, Moon RJ, Harvey NC, et al. 2017. The impact of fragility fracture and approaches to osteoporosis risk assessment worldwide. International journal of orthopaedic and trauma nursing 26: 7-17
- Khosla S, Cauley JA, Compston J, et al. 2017. Addressing the Crisis in the Treatment of Osteoporosis: A Path Forward. J Bone Miner Res 32(3): 424-30
- Bombak AE, Hanson HM. 2016. Qualitative Insights from the Osteoporosis Research: A Narrative Review of the Literature. J Osteoporos 2016: 7915041
- Royal Osteoporosis Society. Raise awareness. Available from: https://theros.org.uk/how-you-can-help/raise-awareness/ [Accessed 01/09/20]
- Groupe de recherche et d’information sur les ostéoporoses. Présentation du GRIO. Available from: http://www.grio.org/osteoporose.php [Accessed 01/09/20]
- Asocacion espanola con la osteoporosis y la artrosis. Objetivos estrategicos. Available from: http://www.aecosar.es/objetivos-estrategicos/ [Accessed 01/09/20]
- International Osteoporosis Foundation. World Osteoporosis Day. Available from: http://www.worldosteoporosisday.org/ [Accessed 01/09/20]
- Raybould G, Babatunde O, Evans AL, et al. 2018. Expressed information needs of patients with osteoporosis and/or fragility fractures: a systematic review. Arch Osteoporos 13(1): 55-55
- Adler RA. 2006. The need for increasing awareness of osteoporosis in men. Clin Cornerstone 8 Suppl 3: S7-13
- Kiebzak GM, Beinart GA, Perser K, et al. 2002. Undertreatment of osteoporosis in men with hip fracture. Arch Intern Med 162(19): 2217-22
- Kanis JA, Cooper C, Rizzoli R, et al. 2019. European guidance for the diagnosis and management of osteoporosis in postmenopausal women. Osteoporos Int 30(1): 3-44
- Fatoye F, Smith P, Gebrye T, et al. 2019. Real-world persistence and adherence with oral bisphosphonates for osteoporosis: a systematic review. BMJ Open 9(4): e027049
- Hiligsmann M, Cornelissen D, Vrijens B, et al. 2019. Determinants, consequences and potential solutions to poor adherence to anti-osteoporosis treatment: results of an expert group meeting organized by the European Society for Clinical and Economic Aspects of Osteoporosis, Osteoarthritis and Musculoskeletal Diseases (ESCEO) and the International Osteoporosis Foundation (IOF). Osteoporos Int: 10.1007/s00198-019-5104-5
- International Osteoporosis Foundation. 2019. Osteoporosis Risk Check. Available from: http://riskcheck.iofbonehealth.org/en/form [Accessed 01/09/20]