Concerns healthy older women may be unnecessarily labelled as 'diseased'

New research has revealed women think osteoporosis might be better labelled as a “risk factor” rather than a “disease”, with a low threshold for diagnosis potentially causing excessive use of medication, which for some will carry a poor risk-benefit ratio.

The world-first research, which revealed community views on the common problem of low bone density or osteoporosis, was conducted by leading health researchers from Bond University and the University of Sydney.

The study has been published in the international open access scientific journal PLOS ONE, and involved 41 women over five focus groups held on the Gold Coast.

The PLOS ONE paper notes the modern definition of osteoporosis was set arbitrarily by doctors at a meeting part-funded by pharmaceutical companies in the early 1990s, where it was decided the bones of a 30-year-old woman were “normal” – a decision that automatically classified up to a third of older women as “diseased”.

Dr Ray Moynihan, a Senior Research Fellow at Bond University’s Centre for Research in Evidence-Based Practice, said the research shed new light on community understanding surrounding osteoporosis and “overdiagnosis” – a problem that occurs when people are labelled with a disease that will not actually cause them any symptoms.

"Overdiagnosis is a risk with osteoporosis, as many people diagnosed will not experience any harm from the condition, yet the medications used to treat it can have sometimes serious side effects," he said.

"The study revealed women may have a preference for describing the condition as a 'risk factor' for a future fracture, rather than a 'disease'."

Since the 1994 definition of osteoporosis, there has been ongoing scientific controversy over whether it was causing too many healthy older women to be overdiagnosed and treated unnecessarily. 

“We found considerable surprise among the women about how osteoporosis was defined by medical experts,” said Dr Moynihan.

"Initially, participants described osteoporosis as bone degeneration, rather than low bone density, causing some fear.

"They also initially had a view that osteoporosis could not be overdiagnosed as bone scans provided 'clear cut' results, and had an imprecise understanding of what overdiagnosis actually meant.

"We found overall the women expressed a strong desire for knowledge and information to help them take control of their health.”

Dr Moynihan said following brief evidence-based presentations to the focus-groups, women expressed:

• a preference for osteoporosis to be labelled as a “risk factor” rather than a “disease”
• concern about the low benefits of medications for some, and about their side effects
• some limited understanding that people could be overdiagnosed
• surprise and unease that an older woman’s bones were classified as normal or not, based on comparing them to a young woman’s bones, rather than other women of a similar age  

Dr Moynihan said the research suggested there was a gap between community expectations and how experts sometimes set low diagnostic thresholds.

"The research reveals a need to better communicate the idea that early detection can be a double-edged sword. It may be beneficial for some but harmful for others," he said.

"This is important knowledge for those seeking to actively manage their health and avoid being diagnosed or treated unnecessarily." 

Moynihan R,  Sims R, Hersch J, Thomas R, Glasziou P, McCaffery K.  Communicating about overdiagnosis: learning from community groups on osteoporosis. PLoS ONE 2017