Information needs for people with osteoporosis

Most of the people we talked with had been given information about osteoporosis by their own GP, consultant and nurses, or given leaflets to read. Others had looked for further information from the internet, national support organisations and newspapers (see also Sources of information).
The people we talked to had different attitudes to information. Some wanted to find out as much as possible about the condition, while others said that they didn’t have a need for it. Sydney said that he doesn’t want to worry about osteoporosis and rather than seeking information, he is more inclined to use a ‘common sense’ approach in his daily life. Valerie said that she is not spending her life thinking about what she might have wrong with her and she is trying to get on with earning a living.
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Some people didn’t know much about osteoporosis at the time of their diagnosis and wanted to find out more. Some like Carol were shocked to be diagnosed because like many she was mistaken in believing that osteoporosis is ‘an old people’s disease’ and she saw herself as fit and healthy. Having access to information and advice soon after diagnosis was very important to many people, but Beryl didn’t know where to go or who to ask for information.
Those diagnosed many years ago like Joan, made the point that now there is much more information available. But a few, like Gloria and Iris, believe that the content of the information needs to ‘lighten up’ a little bit.
Many of the people we talked with said that they still have information needs regarding medication, self-help and how osteoporosis will affect them in the future. People wanted to find out information on a diverse range of issues including the rates of success (and failure) of the current medication available in the UK, why the dosage of alendronic acid is the same for everyone regardless of size and height, what type and how much weight bearing exercises to do, if there are alternatives to pharmacological treatments and specific information to halt bone deterioration.
Another issue raised by Michelle is that new information is appearing in medical journals all the time and health professionals need to update their health advice to patients accordingly. Similarly, as more medication becomes available some people would like to know about the advantages of new treatments. Several people have questions regarding zoledronic acid; Aclasta  and would like to know who gets recommended for these drugs and why and whether the yearly infusion is a better treatment than alendronic acid as a weekly or daily tablet.
A few people felt that that there needed to be greater awareness of osteoporosis amongst the general public, with more information easily available in GP surgeries.
In particular, the men we talked to felt strongly that there is still insufficient information and awareness about the fact that osteoporosis affects men. Dennis said that he doesn’t see any leaflets or other printed material in GP surgeries or hospital clinics about this important piece of information.
Information needs of younger adults
All the younger adults we talked to thought that the current information available is unsuitable for younger people who may be working full time or busy raising a young family. They thought that the bulk of the information is directed towards older people and younger ones have being overlooked. When David was diagnosed at the age of twenty-five, he got the same leaflet as his granny who was seventy, even though they had different circumstances and information needs. Moreover, David doesn’t think that leaflets are a good idea for younger adults and a website and/or resource centre would suit their need for advice and information better. He suggested that the balance needs to be right between factual information and a positive encouraging message. Jane and David thought that information for younger adults should aim to provide practical ways of how to cope with a chronic condition but still lead an active life.

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Last reviewed June 2017.
Last updated June 2017.


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