Evidence
Alert

How to improve information for people with osteoporosis

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. 

Further information on osteoporosis is available on the NHS website

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.

What’s new?

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. 

What’s next?

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

Keele University's website for the iFraP (Improving Uptake of Fracture Prevention Drug Treatments) project

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.

Commentaries

Study author

We did not look for obscure resources in this research. We assessed the easily accessible ones that are often recommended to patients and are available in clinics. And yet we still found that these resources are difficult to understand and contain inaccuracies.

We already knew that there is a lot of uncertainty and confusion about osteoporosis. But we were surprised that none of the resources met our readability standards, especially since the importance of health literacy is now well-understood. The quality checklist we used had some relatively simple criteria, such as whether images have descriptions. We were surprised to get relatively low scores on that as well.

Some of the inconsistencies in language are helpful in unlocking problems around understanding osteoporosis and its treatments. 

We are trying to engage with the authors of this information. We want to drive changes to help patients understand their condition. We also want to ensure that the tools and training we are developing within the iFraP study use optimal language.

Fay Crawford-Manning, Honorary Lecturer in Bone Health, School of Medicine, Keele University and Postdoctoral Research Fellow, Exeter Medical School 

Royal Osteoporosis Society

We welcomed the opportunity to work closely with the academic team who examined a number of available information resources, including two of our own. The involvement of patients and service users was especially valuable and will add to the insights we are gaining through our own user research.

Here at the ROS, we are currently working to transform our Health Information service, making our resources – which are in high demand with both users and health professionals – as accessible, engaging and user-friendly as possible. Our recent suite of videos aimed at people newly diagnosed with osteoporosis or spinal fractures, co-created and presented by people with lived experience of the condition, is testament to this.

This new paper will be invaluable as we move forward with improving the readability of our resources. We hope to continue to work closely with the researchers as we improve certain aspects of our resources, including language and ensuring any unavoidable medical terminology is explained clearly, to better meet the needs of our users

Anna Seward, Health Information Manager, Royal Osteoporosis Society 

Lived experience 

I am 86 and I had severe osteoporosis diagnosed about 30 years ago. Over the years I have talked to a number of other people with the disease and shared our experiences. I have seen how attitudes to it have changed during this time.

People who are newly diagnosed have little or no idea what the disease is, and, for example, they often confuse it with osteoarthritis. They don’t know what the implications are for them, and they need better information. People who have heard of the side effects of beneficial drugs and have decided not to take them also need good quality information. Improved information would help GPs who are unclear about the available treatments for osteoporosis, and dentists who are confused about treating patients taking bisphosphonates.

The impact of this research depends on the willingness of information providers to alter their leaflets to comply with the findings. If this is done, it could lead to much less confusion about osteoporosis and its drug treatments. 

I hope the research will lead to a range of reliable sources of information. I see the need for clear, unambiguous information appropriate for different groups. The level of detail and language will have to be different to target each of these groups.

Philippa Russell, Public Contributor, Birmingham   

Researcher

This research could guide future development of patient materials and information on musculoskeletal conditions. The recommendations could empower patients, help manage their expectations, foster better self-management, and ensure consistent communication among professionals.

The recommendations are also transferable to other health conditions. Improvement in the delivery of health can then be assessed using patient feedback, quality of life measures and practitioner satisfaction.

Jacqueline Thompson, Research Fellow, University of Birmingham