Osteoporosis

Sources of information for people with osteoporosis

People who wanted to find out more about osteoporosis sought information from many different sources such as support groups, the internet, books and medical journals. A few attended lectures and talks organised by the National Osteoporosis Society (NOS). Several people said that magazines and newspapers were also a good source of information. In general, people seeking information and advice tended to rely on more than one source at any one time.
Many people tended to use the internet following their diagnosis. Their views differed regarding the quality and quantity of information on the internet. Several people were put off by it and stopped using it. Iris said that the information she found ‘frightened’ her, in particular the side effects of medication. Valerie said that there was, ‘too much negativity’. Sarah wanted information about alendronic acid and an on-line chemist-type of site apparently gave her inaccurate information about the year it was licensed. Susan stressed that it’s always ‘safe’ to only search official websites. A few people thought that the Canadian and American websites were very informative.

Some people have used the internet to find out general information about osteoporosis or searched for information that answered their specific questions. But people who searched for specific rather than general information indicated a poor rate of success. Joan for instance couldn’t find an answer regarding whether taking the proton pump inhibitor aggravated her osteoporosis. Clare couldn’t find the information she wanted about medication dosage.

Other people, like Michelle, used the chat rooms on the internet to learn about other people’s experiences of osteoporosis, which she found helpful.
For some people, the National Osteoporosis Society (NOS) website and their Helpline had been an important source of information and advice. Jenny was able to find out all the information she wanted about the medications offered to her by her doctor and felt able to phone their helpline with any problem. She thinks that both services are ‘brilliant’. Many people referred to the NOS leaflets and booklets as an important, and in some cases, their only source of information. Some people subscribed to the NOS magazine which they said was invaluable because it kept them up to date with pharmacological treatments. Younger women, who were osteopenic, found the forum on the NOS website was not relevant to their age group.
NOS helpline are answered immediately (as long as the caller gets through) and they do not generally call people back. A query submitted via email has a five working day standard response time and via letter it has a 10 working day reply standard.
Some people said that there is still a need to make the public more aware of osteoporosis. Some thought that TV, newspapers, etc were good vehicles for disseminating information and awareness about the condition.
A few people sought information from another health professional. Carol sees herself as ‘very fortunate’ to have a niece who is an osteoporosis specialist nurse, who has provided her with most of the information and advice she needed to overcome her initial concerns. With her niece’s guidance she has been able to confidently manage her osteoporosis. Betty said that her relative, who is a physiotherapist, gave her all the information she needed.
In some parts of the country, hospital clinics organise osteoporosis education courses, which are run by physiotherapists, specialist nurses and dieticians. The courses provide information and advice on medication, exercise and diet to encourage good self management. Iris and Noreen attended this type of course in different hospitals and both found it very useful and comprehensive. Many people we talked to would like information about these types of courses in their local areas.



 

Last reviewed July 2013
Last updated April 2011

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