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Osteoporosis Patients and Caregivers Offer Insights into Their Experience and Concerns Regarding Diagnosis, Fractures, Treatment, and Adherence

Loss of independence (42%) and lost mobility (25%) ranked as the leading concerns about aging for osteoporosis patients who responded to a recent Bone Health Index Survey by the National Osteoporosis Foundation (NOF), the nation’s leading healthcare organization dedicated to preventing osteoporosis and broken bones. Caregivers of osteoporosis patients noted they were most concerned that they would be unable to manage their patient or loved one’s care (50%).

“Given that approximately two million broken bones are caused by osteoporosis each year[i], the patients’ concerns are warranted,” said Amy Porter, executive director and CEO of NOF. “Over 300,000 of those broken bones will be hip fractures – the most life changing of all fractures. In fact, 25% of women over the age of 50 who sustain a hip fracture die in the year following the fracture, 50% never walk independently again and 20% require permanent nursing home placement[ii]. We can and we must do more to prevent these fractures.”

Fifty-two percent of the patients who responded to the survey said they had broken a bone, with the average number of bones broken being three. Yet, surprisingly, 44% said they were only somewhat or not concerned about fracturing again.

“It’s troubling that patients who experienced a fracture were not more concerned about another fracture,” said Andrea J. Singer, MD, NOF Clinical Director and Trustee. “The most powerful predictor for sustaining an osteoporotic fracture is a prior fracture; nearly half of patients who present with a hip fracture have previously had some other osteoporosis-related fracture.[iii]

A majority (60%) of those who said they broke a bone were not referred for a bone density test, such as an axial dual-energy X-ray absorptiometry (DXA) test, after the fracture to determine if osteoporosis was the underlying cause of the fracture and less than half (47%) were prescribed an osteoporosis medication for treatment. This could prove to be devastating and costly for our rapidly aging population.

In 2010, Medicare paid over $16 billion for direct costs of new fractures that year and the cost is projected to grow to over $25 billion by 2025[iv]. Unlike other diseases, where there is no accurate screening test, osteoporosis is a model for disease prevention with accurate, cost effective diagnostic tools and inexpensive treatments that work at reducing fractures. Bone density testing is more powerful in predicting fractures than cholesterol is in predicting myocardial infarction or blood pressure in predicting stroke[v].  Medicare beneficiaries who have a DXA bone density test have 35% fewer hip fractures and 22% fewer other fragility fractures[vi].

Of the patients who were on osteoporosis treatment, 92% said they had read or viewed negative information about the medication.  Their length of time on medication was short, with 42% saying they’d been on treatment for less than two years.

Thirty eight percent said they were prescribed an osteoporosis medication they didn’t take. Fear of side effects from the medication was the leading factor for not taking the medication (79%).  And 51% of patients who were on a medication said they stopped taking the osteoporosis medication most commonly because of the side effects they experienced (53%) or out of concern for the risk of side effects (38%).

In actuality, the number of fractures that are prevented with treatment far outweighs the risk of atypical femur fractures and osteonecrosis of the jaw.[vii]  Treatment of women with osteoporosis for up to five years would result in fewer than one atypical femur fracture caused per 100 osteoporotic fractures prevented.[viii]

“Available therapies for osteoporosis are effective in preventing fractures and can reduce the risk of future fractures by about 30-70%,” said Dr. Singer. “New pharmacologic agents in the pipeline will expand or offer more treatment options for patients.”

Some encouraging news from the survey was that most patients and caregivers (89%) knew that proper diet and exercise, including getting the recommended daily allowance of calcium and vitamin D, is an important part of treating osteoporosis. And 90% knew that osteoporosis cannot be treated solely through diet and exercise.

“We are very pleased that our online community of patients, caregivers and people interested in bone health continues to grow and that the members are very engaged,” said Ms. Porter.  “We will use the insights gleaned from our Bone Health Index Survey to evaluate our current educational materials and activities and improve the services we provide to patients, caregivers and healthcare professionals.”

About the Survey

NOF and its partner Inspire, the largest online patient engagement platform in the U.S., sent the 80-question survey via email on July 25, 2016, to NOF’s approximately 28,000 online community members who self-identified as osteoporosis patients or caregivers.  The deadline for responding was August 7, 2016. There were 853 responses (3%) during the two-week open period. Additional support for this project was provided by Amgen.

About the National Osteoporosis Foundation 

Established in 1984, the National Osteoporosis Foundation is the nation’s leading health organization dedicated to preventing osteoporosis and broken bones, promoting strong bones for life and reducing human suffering through programs of awareness, education, advocacy and research. For more information on the National Osteoporosis Foundation, visit www.nof.org.

[i] Burge R, Dawson-Hughes B, Solomon DH, Wong JB, King A, Tosteson A. Incidence and economic burden of osteoporosis-related fractures in the United States, 2005–2025. Journal of Bone and Mineral Research 2007, 22: 465–475

[ii] Bone Health and Osteoporosis: A Report of the Surgeon General. U.S. Department of Health and Human Services, Public Health Service, Office of the Surgeon General, Washington, DC, 2004]

[iii] Lyles KW, et al. Abstract SA405. American Society for Bone and Mineral Research (ASBMR) 28th Annual Meeting, Philadelphia, PA, 2006.

[iv] Osteoporos Int. 2011 Jun;22(6):1835-44. doi: 10.1007/s00198-010-1419-7. Epub 2010 Dec 17. Medical costs of osteoporosis in the elderly Medicare population. Blume SW1, Curtis JR.

[v] Bone Densitometry: The Best Way to Detect Osteoporosis and to Monitor Therapy Paul D. Miller, Carol Zapalowski, Carolina A. M. Kulak, and John P. Bilezikian The Journal of Clinical Endocrinology & Metabolism 1999 84:6, 1867-1871

[vi]doi: 10.1377/hlthaff.2011.0233, Health Aff December 2011 vol. 30 no. 12 2362-2370 http://content.healthaffairs.org/content/30/12/2362.long

[vii] Shane E, et al. Atypical Subtrochanteric and Diaphyseal Femoral Fractures: Second Report of a Task Force of the American Society for Bone and Mineral Research. J Bone Miner Res, 2014 Jan;29(1):1–23.

[viii] Black DM, Rosen CJ. Postmenopausal Osteoporosis. N Engl J Med 2016; 374:254-262.