Much information about the bone condition, osteoporosis, is too difficult to understand. It is also sometimes misleading. New research makes recommendations for improvements. The aim is for people with the condition to have high quality, more readable information.
People with osteoporosis have weakened bones that become more likely to break. Many know little about their condition and the treatments that reduce their risk of fractures. As a result, many people with osteoporosis do not take the medicines they are offered.
UK Government policy stresses the need for clear, balanced information, which allows people to be fully involved in decisions about their care and treatment. This research suggests ways of improving information on osteoporosis. Balanced information on the benefits and risks of drug treatments is needed. Simple language is essential.
The researchers are working with public and private providers of information. Together they aim to improve resources.
What’s the issue?
More than three million people in the UK have osteoporosis. Many are confused about the condition and do not take the medicines which could prevent fractures. The researchers describe an ‘osteoporosis crisis’ and say that poor communication is leading to preventable fractures.
Misunderstandings arise because people with osteoporosis have no symptoms. They may only find out they have the condition after they have broken a bone. Drug treatments lower the risk of fractures (they do not prevent all fractures). Clinicians may struggle to explain reduced risk.
Good quality information can empower people to take a full part in decisions about their treatment. Two in three people in the UK access medical information online. Resources that are difficult to understand may deter some from starting or continuing with treatment.
Researchers explored the quality, accuracy, and readability of popular resources about osteoporosis and its treatment. Their findings and recommendations will feed into the larger Improving uptake of fracture prevention drug treatments (iFraP) study, which is developing resources to support communication between clinicians and patients.
The team identified commonly used sources of information for people with osteoporosis. The resources included webpages, a video and booklets available online. They were produced by patient support groups, a GP-led group, the NHS, and private healthcare provider BUPA.
Researchers measured how easy the resources were to read, and how reliable the information. They assessed whether resources would support people making a decision, and whether conflicts of interest were declared.
Nine resources were studied. They were all too complex for most people to understand. There were inaccuracies and gaps in information.
- No resource met UK national standards on ease of reading.
- Three recognised that the reader might be making a decision about drug treatment; only two explained the consequences of untreated osteoporosis. Only one featured content to help the reader think about their priorities.
- None gave figures on the likely benefits or harms with drug treatment. Two described the benefits and harm of drug treatments in equal detail; the other seven put more emphasis on harms than benefits.
- Only two cited sources for the evidence they quoted.
Researchers discussed their findings with an advisory group including specialist clinicians, GPs, and patients. The panel made suggestions for improving explanations. People with osteoporosis helped to draft recommendations for future resources.
The advisory group felt that there was too much technical language. Some language was misleading, for example bones described as ‘spongy’. Some resources appeared to contradict themselves, by describing osteoporosis as having no symptoms and then listing signs for people to look out for.
Why is this important?
The researchers, people with osteoporosis and the project’s advisory group, worked together to develop recommendations to improve information.
When describing the condition:
- use the term ‘weak bone’ and avoid descriptions of bone such as ‘spongy’ and ‘honeycomb’
- describe the physical, social, and psychological impact of osteoporotic fractures, without causing fear
- use labelled images or animations where possible.
When describing drug treatments:
- balance the amount of information about benefits and risks of drug treatment, and use rates of fractures to explain
- describe the benefits of treatment as strengthening bone and lowering the chance of fractures, and avoid misleading terms such as ‘prevent’ or ‘renew’
- provide accurate information about how to take osteoporosis medicines, and for how long.
The recommendations are relevant for other health conditions. Other research has shown that three in four leaflets in GP surgeries are written for a reading level above the national average.
The researchers suggest that patient information:
- states who it is for
- uses plain language, and avoids technical jargon
- states where evidence is from and who has funded the information.
The researchers have contacted the publishers of the resources analysed in this study. Some are now seeking to improve their osteoporosis information. Information produced by the Royal Osteoporosis Society was assessed in this study. The researchers are helping the charity review its resources.
The wider iFraP study is producing a package of resources. These include clear, consistent and accurate information for people with osteoporosis. There is also a training package for clinicians, and an online decision support tool for clinicians and patients.
The team is now researching the way osteoporosis is described in mainstream news media.
You may be interested to read
This NIHR Alert is based on: Crawford-Manning F, and others. Evaluation of quality and readability of online patient information on osteoporosis and osteoporosis drug treatment and recommendations for improvement. Osteoporosis International 2021;32:1567–1584
Patient information resources from the Royal Osteoporosis Society, which have been updated as a result of this study.
Editorial by one of the authors about how osteoporosis is defined: Paskins Z, and others. Bringing osteoporosis up to date: time to address the identity crisis. Age and Ageing 2020;49:3
The first national study of public and patient research priorities in osteoporosis: Paskins Z, and others. Public priorities for osteoporosis and fracture research: results from a general population survey. Archives of Osteoporosis 2017;12:45
Results of focus groups to identify important areas for research: Hawarden A, and others. Public priorities for osteoporosis and fracture research: results from a focus group study. Archives of Osteoporosis 2020;15:89
Funding: This research was jointly funded by the NIHR Clinician Scientist Award, the NIHR Clinical Research Network Scholar Programme, and the NIHR Applied Research Collaboration West Midlands.
Conflicts of Interest: The study authors declare no conflicts of interest.
Disclaimer: NIHR Alerts are not a substitute for professional medical advice. They provide information about research which is funded or supported by the NIHR. Please note that views expressed in NIHR Alerts are those of the author(s) and reviewer(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.