Patients Fear Osteoporosis Quality of Life Impact, Yet Lack Tools to Manage Concerns and Improve Osteoporosis Outcomes, New Survey Says

DENVER -

- International Osteoporosis Foundation (IOF) launches OsteoLink to address unmet needs in osteoporosis management through digital and in-person patient and physician communication networks across Europe and Australia

The International Osteoporosis Foundation (IOF) today announced results from a new multinational survey of patients (n= 844; women 55+ with post menopausal osteoporosis) and physicians (n= 837; general practitioners and specialists treating osteoporosis) at the 31st annual meeting of the American Society of Mineral and Bone Research (ASBMR). Results show that patients fear the impact of osteoporosis on quality of life, such as breaking a bone and reduced activity, far more than physicians believe. Results also show that patients lack appropriate information and tools to address these concerns and improve their osteoporosis management. The survey, conducted in 13 countries across Europe and Australia, exposes challenges with osteoporosis management that might be addressed through improved communications networks for patients and physicians. To address these unmet needs, IOF proudly launches OsteoLink, a new community based networking programme to create better communication around the management of osteoporosis, throughout Europe and Australia.

“People with osteoporosis fear the emotional and physical impact osteoporosis has on their lives,” said Prof Rene Rizzoli, IOF Vice Chairman of the Committee of Scientific Advisors, “but because they are often not as well informed as they think, their osteoporosis is not well managed. This leads to increased risk of fracture and a reduced quality of life.”

Patients are significantly more concerned about the impact osteoporosis has on their quality of life than physicians believe

- 79% of patients are afraid of fracturing/breaking a bone while physicians think only about half of patients (51%) might fear fracture - 70% of patients are afraid that they won’t be able to be as active as they would like while physicians estimate this percentage at only 40% - 60% of the patients worry about becoming more dependent on others while physicians estimate this percentage at only 30% - 57% of patients are afraid of not being able to work for as long as they need to while physicians only estimate that 30% of patients have these concerns

Patients claim to be better informed about their osteoporosis than the data reveal

- 93% of patients correctly describe osteoporosis as a condition that “causes bones to be brittle and fracture/break easily” yet over half (57%) of patients still incorrectly believe osteoporosis is just “part of getting old” - However, 1 in 3 patients cannot identify any of the risk factors for osteoporosis - On a positive 4 out of 5 patients (82%) confirm they are informed by their physicians about the importance of treatment adherence, and 87% of physicians confirm they provide their patients with this information - However, approximately one third (32%) admit to discontinuing their osteoporosis treatment and almost the same number of patients (29%) do not see a problem in missing a dose once in a while

Patients fear fractures, yet their adherence to treatment is poor. Although they admit to receiving information on the importance of taking their osteoporosis medicine, they do not fully understand that adherence significantly increases fracture protection(1)

- 79% of patients are afraid of fracturing/breaking a bone - 82% of the patients report being informed by their physicians on the importance of taking their treatment continuously - Approximately 1 out of 3 patients (32%) admit to discontinuing their osteoporosis treatment - These patients report they discontinue their osteoporosis treatment for about 5.5 months on average; 2.6 months longer than physicians estimate - More than one in four (29%) of patients do not see a problem in missing a dose once in a while

“Current strategies to educate people on osteoporosis management do not adequately provide the information and support people with osteoporosis require to reduce their risk of fracture and maintain the quality of life they desire,” said Patrice McKenney, CEO of International Osteoporosis Foundation. “As part of our ongoing fight to improve the management of osteoporosis, the IOF is launching a landmark community based programme to develop communications networks to improve the understanding and outcomes of osteoporosis care.”

About OsteoLink

In response to the unmet needs highlighted by the survey findings, IOF announces the launch of OsteoLink, a novel community based networking programme for people with osteoporosis and physicians in Europe and Australia designed to improve communications networks for people with osteoporosis and their friends and family, both online and in person. Supported by Amgen (EUROPE) GmbH, Medtronic Foundation and other potential partners, OsteoLink will provide dynamic online and in person networks designed to improve osteoporosis communications with tools that respond to current unmet needs.

Working closely with its network of approximately 200 IOF National Societies throughout Europe and Australia, IOF will support the development of written and online communications tools, interactive Web content and an e-mail engagement platform to improve osteoporosis communications.

In 2010, all content for the OsteoLink programme will be developed by a scientific committee made up of communications and social networking experts, IOF and National Society members, physicians and people with osteoporosis themselves.

About the survey

Results contained in this press release are from a multinational survey commissioned by IOF and developed, fielded and analysed by GfK, the German market research firm. The survey was fielded in June and July, 2009. Quantitative analysis was conducted from a sample size of 844 patients (women with diagnosed post-menopausal osteoporosis) and 837 physicians from 13 countries (France, Germany, Italy, Spain, UK, Austria, Belgium, Hungary, Greece, Netherlands, Sweden, Switzerland, and Australia). All research was done through structured telephone interviews, lasting an average of 15-20 minutes. Additional qualitative insights were obtained from research interviews with patients, GPs and specialists in France and Germany.

About Osteoporosis

Osteoporosis, in which the bones become porous and break easily, is one of the world’s most common and debilitating diseases. The result: pain, loss of movement, inability to perform daily chores, and in some cases, death. Worldwide, one out of three women over 50 will experience osteoporotic fractures, as will one out of five men (2) (3) (4). Osteoporosis can, to a certain extent, be prevented, if it can be easily diagnosed and effective treatments are available. Nevertheless, osteoporosis often remains under-diagnosed and under-treated, leaving people at unnecessary risk of fracture.

About the International Osteoporosis Foundation

The International Osteoporosis Foundation (IOF) is a not-for-profit, nongovernmental organization dedicated to the worldwide fight against osteoporosis, the disease known as “the silent epidemic”. IOF’s members - scientific researchers, patient, medical and research societies and industry representatives from around the world - share a common vision of a world without osteoporotic fractures. IOF, with headquarters in Switzerland, currently includes 194 member societies in 92 countries, regions and territories. The Foundation works with its members to advance the understanding of osteoporosis and to promote prevention, diagnosis and treatment of the disease worldwide. Among its numerous programmes and activities, IOF mobilises the global osteoporosis movement on World Osteoporosis Day every year and organises the IOF World Congress on Osteoporosis and the IOF World Wide Conference of Osteoporosis Patient Societies every two years.

For more information about IOF visit www.iofbonehealth.org

References

(1) Rabenda V, Mertens R, Fabri V, et al. (2008) Adherence to bisphosphonates therapy and hip fracture risk in osteoporotic women. Osteoporos Int 19:811.

(2) Melton U, Chrischilles EA, Cooper C et al. How many women have osteoporosis? Journal of Bone Mineral Research, 1992; 7:1005-10

(3) Kanis JA et al. Long-term risk of osteoporotic fracture in Malmo. Osteoporosis International, 2000; 11:669-674

(4) Melton LJ, et al. Bone density and fracture risk in men. JBMR. 1998; 13:No 12:1915

Source: International Osteoporosis Foundation

Jessica Walsh, +44(0)7827-883-888, jwalsh at hillandknowlton.com, or Shipra Singh, +44(0)20-7973-4424, ssingh at hillandknowlton.com, both of Hill & Knowlton, for International Osteoporosis Foundation