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Experiences of osteoporosis shared online
27 Apr 09
People with osteoporosis are now able to benefit from the experiences of others at www.healthtalkonline.org, the award-winning patient website based on Oxford University research.
Visitors to the site can see, hear and read a wide range of experiences and perspectives on what it is like to have osteoporosis. The site also gives health professionals an insight into how people think and feel about life with this condition.
Around half of over 75 year-olds will have some degree of osteoporosis, a disease of bones which causes them to be thinner, less dense and more fragile. Having osteoporosis leads to an increased risk of fracture and every year, there are about 250,000 fractures resulting from osteoporosis in the UK. Although most common in elderly women, osteoporosis can also affect men and can occur at any age.
The new resource is based on research by the DIPEx Health Experiences group in the Department of Primary Care at the University of Oxford. It includes video and audio clips in which over 40 people with osteoporosis – men and women, old and young – speak on a wide range of issues that have affected them, such as diagnosis, medication, diet, body image, and exercise.
Dr. Ann McPherson
The research has highlighted several key issues for people with osteoporosis. A main concern participants had about the future was the fear of becoming disabled and dependent on others.
Jane was interviewed for the new section on the www.healthtalkonline.org website. She said: ‘Well my mum, my grandma and my aunt all had osteoporosis. And I remember being fairly concerned about it but… obviously medically things had moved on quite a lot and so I didn’t really pay much issue to it. I hurt my neck snowboarding, didn’t get anything done about it for about two years, and then went to a GP who X-rayed me and found out that I had a compression fracture in my neck… I think I was about 34.’
The interviews were carried out by Dr Maria Salinas of Oxford University. Many of those interviewed thought there was inadequate information about how best to manage their osteoporosis, how much weight bearing exercise to do, or about the different treatments and medications available. Some felt that health professionals often believe that osteoporosis is only an older person’s disease, and male respondents felt strongly that there is still insufficient awareness that osteoporosis also affects men.
‘It’s amazing the lack of knowledge,’ says Robert. ‘You know, my GP asks me what’s going on, what the news is on osteoporosis, which is quite scary really… I understand they are general practitioners but, you know... there’s a lot of ignorance out there.’
People believed that medication, a calcium-rich healthy diet and weight bearing exercises offered the best protection to prevent a deterioration of their condition. Some respondents were optimistic about the future due to the advances in osteoporosis treatments and ongoing research.
Dr. Ann McPherson, medical director of the DIPEx Health Experiences group says: ‘The research has highlighted several key issues for people with osteoporosis. A main concern participants had about the future was the fear of becoming disabled and dependent on others. Many elderly respondents talked about an increasingly reduced network of family and friends, which led to less practical support when dealing with their condition.’
The research was funded by the Dunhill Medical Trust, who also supported the launch along with the National Osteoporosis Society.
The www.healthtalkonline.org website now includes sections on almost 50 different illnesses and health conditions, including cancers, heart disease, Parkinson’s disease, autism, HIV, diabetes, rheumatoid arthritis, and mental health. It is aimed at patients, their carers, family and friends, doctors, nurses and other health professionals.
Listen to a patient talk about her experiences