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Adverse effects of media reports on the treatment of osteoporosis

  • Cristiana Cipriani
  • Jessica Pepe
  • Salvatore Minisola
  • E. Michael Lewiecki
Review

Abstract

Purpose

The review focused on the role that media reporting plays in the level of public awareness about osteoporosis and its influence on osteoporosis treatment decisions.

Methods

We reviewed the literature on the role of media on three main aspects influencing patient adherence to osteoporosis treatment: the awareness of osteoporosis as a major health problem, the perception of the effectiveness of osteoporosis medications, and the fear of adverse effects with osteoporosis medications.

Results

A review of the literature confirmed what is routinely observed in clinical practice—that media report can strongly influence the level of awareness of osteoporosis and fracture risk. Inadequate and/or incorrect information on osteoporosis in the media are associated with a low level of awareness of the disease. High-risk patients may have a poor understanding of the need for treatment. Alarming information in the media over the last 2 decades regarding effectiveness and safety of long-term osteoporosis treatment is associated with reduction in the use of osteoporosis medications.

Conclusions

There is a gap between the application of clinical recommendations and patient perceptions of osteoporosis and its treatment. There is a need for better education of patients and practitioners aimed at recognizing the serious consequences of fractures and understanding the expected benefits and potential risks of treatment. Media reports that disseminate evidence-based information on the balance of benefits and risks could help to reduce the osteoporosis treatment gap and mitigate the crisis in osteoporosis care.

Keywords

Media Osteoporosis Fracture Treatment 

Introduction

There have been remarkable advances in the treatment of osteoporosis over the past 2 decades, with many medications now available to increase bone strength and reduce fracture risk [1, 2]. Progress has been made in the treatment of postmenopausal osteoporosis, male osteoporosis, and the most common forms of secondary osteoporosis. Clinical practice guidelines offer recommendations for the evaluation and treatment of patients with osteoporosis, allowing for individualization of treatment decisions based on all available clinical information [3, 4]. Notwithstanding these advances, the therapy of osteoporosis, as for many other chronic silent conditions, can be problematic for several reasons. First, a low-treatment compliance rate has been described since the early 2000s [5]. In addition, concerns about safety have arisen in the last 2 decades, causing some patients to decline treatment or stop treatment which they are already taking [6, 7]. Finally, there has been a significant reduction in the prescription of osteoporosis drugs, possibly due to a low level of awareness of osteoporosis and competing healthcare priorities [8]. Another factor contributing to healthcare decisions is media reporting. This is a review of the role that media reporting plays in the level of public awareness about osteoporosis and its influence on osteoporosis treatment decisions.

Awareness of osteoporosis

Awareness of osteoporosis as a common chronic condition and the potentially serious consequences of osteoporotic fractures are important in implementing public health measures to reduce fracture risk [9]. Lack of awareness helps explaining the low level of compliance with osteoporosis medications. Many aspects have been influenced by media in recent years. In 2008, Feldstein et al. reported that key factors for participation of patients in a secondary prevention program are related to the need of patients’ education [10]. The concept of fatalism has often arisen in the consideration of osteoporosis as a normal consequence of aging [10]. This view of osteoporosis has not been overcome in the following years; a recent review of studies from America and Europe showed how the fatalistic concept is accompanied by other conceptual categories that collectively minimize the relevance of the disease [11]. Among them, the lack of awareness in identifying osteoporosis as a health issue, or as a relevant issue compared with other diseases, refusal to accept a diagnosis of osteoporosis, and failure to link the experienced fracture with bone fragility are the most common concepts [11]. The lack of information in the media has been shown to have a key role in the field [12, 13]. Wallace et al. reported that the proportion of articles with osteoporosis information in popular women’s magazines and in newspapers in the period 1998–2001 was low, particularly compared with other common diseases (e.g., cancer) [13]. In addition, the issues most often discussed were related to primary prevention measures and rather than treatment to reduce fracture risk, often with incomplete information for readers [13]. Hence, poor information on osteoporosis in the media and particularly little reference to scientific studies were associated with a low level of awareness of the disease, the clinical relevance of a recent low-trauma fracture, and the expected benefits of treatment to reduce fracture risk [10, 14].

Gender has also a negative influence in perception of the disease. Osteoporosis is commonly considered to be a “female disease” and, therefore, barely considered or accepted by men [11]. Studies have described limited knowledge on osteoporosis and preventive strategies in men of different ages, including men at high-risk for fracture [15, 16, 17]. Strategies aimed at implementing osteoporosis information are, therefore, needed on a large scale. Public campaigns by different organizations have been developed on a national and international basis. These have aimed to increase awareness of osteoporosis and fractures and invite patients, healthcare professionals, hospitals, scientific and patient societies, public health authorities, and policymakers to take part in these campaigns [18, 19, 20]. In recent years, campaigns have also focused on male osteoporosis in effort to overcome stereotypes associated with the view of osteoporosis as a disease affecting only postmenopausal women. Collectively, several campaigns were developed in terms of secondary prevention strategies [18], but much more is needed for primary prevention.

Another important aspect of patient perception about osteoporosis is related to awareness of the need for screening tests. Data collectively showed confusion in the understanding of the role of bone mineral density (BMD) testing [11]. Patients are not adequately informed on what a BMD test is, how it is performed, how data are interpreted, and how can help in identifying the risk of fracture [11]. Not surprisingly, data showed how the perceived need for BMD testing is acquired by patients according to newspaper articles [10].

Perception of the effectiveness of osteoporosis medications

Patient awareness of the need of osteoporosis medications has been strongly influenced by media reports in the last few decades. Major issues of concern include understanding the benefits of starting treatment, initial medication selection, effectiveness, and safety. Studies investigating compliance with osteoporosis treatments have shown that lack of motivation and/or confidence in their effectiveness represent very common reasons for discontinuation [21, 22]. Lack of information and/or the presence of incorrect information in the media have significantly influenced patient awareness. While medical researchers strive for high-quality data to publish in peer-reviewed scientific journals, media reporters may present incomplete and unbalanced information about osteoporosis treatments, often with an emphasis on rare possible side effects [23, 24, 25]. It has also been demonstrated that newspaper journalists are likely to report the initial favorable findings of a scientific study but much less likely to report subsequent studies that fail to replicate the results [25]. Taken as a whole, media reporting may sometimes be a barrier for patients in understanding the proper place of medications in the treatment of osteoporosis.

Safety concerns

Safety issues have a key role in the use of osteoporosis treatments and have influenced the use of virtually any bone active drug in the last decades. The first concerns are dated back to 2002, when the results of the Women’s Health Initiative (WHI) study on combined hormone replacement therapy (HRT) were published [26]. This was a large randomized trial aimed to assess the major health benefits and risks of the combination of estrogen and progestin in the US healthy postmenopausal women aged 50–79 years [26]. The trial was stopped after 5.2 years because of an increased risk for cardiovascular disease and breast cancer in association with the use of HRT [26]. Concomitantly, a slight decrease in the number of hip fractures and colon cancer was documented [26]. Notwithstanding the limitations in designing the study and the contrasting results reported in the previous studies, media reports strongly influenced the use of HRT in the following years and caused confusion among the public and the physicians [27, 28, 29, 30]. Media reports were a very common source of information for women: a systematic review of studies published worldwide after the WHI study reported that 43% of women obtained information from the media that were considered as a reliable as healthcare providers [31]. A relevant proportion of women on HRT were influenced in their use of the treatment by the reports about WHI, with confusion among women regarding the HRT effect on cardiovascular disease [30, 32]. Safety concerns seemed to overwhelm the findings of beneficial effects of HRT in reducing fracture risk [28]. Data are consistent in revealing that women mainly perceive the positive short-term effects of HRT (e.g., on climacteric symptoms) and much less the long-term effects on fracture prevention as the main benefits from starting HRT therapy [31, 32]. Literature reviews have demonstrated that many women are in need of additional information on HRT, particularly, in developing countries [31, 32].

The use of oral bisphosphonates for the treatment of osteoporosis has declined by more than 50% in the period 2008–2012 in US [6]. This decrease cannot be explained by an increase in intravenous bisphosphonate use, as their use in US increased in the period 2006–2010 but significantly declined by 22% in 2012 [6]. Safety concerns raised by a US Food and Drug Administration (FDA) review of the long-term efficacy and safety of bisphosphonates may have contributed to the reduction in bisphosphonates prescriptions [33]. The main question raised by the FDA report was whether continuing bisphosphonates treatment after 3–5 years has consistent efficacy in fracture rate reduction, with conclusions of lack of evidence on the topic [33]. Concomitantly, questions raised about possible rare adverse outcomes have likely contributed to the reduction in bisphosphonates use [6]. A study by Jha et al. has recently demonstrated that the frequency of Google search terms related to alendronate had a spike in the years corresponding to the publication of studies on the potential risk of osteonecrosis of the jaw (ONJ) (2006), atrial fibrillation (AF) (2008), and atypical femur fractures (AFF) (2010), as well as the FDA report on bisphosphonate long-term use (2012) [8]. Not unexpected, the increased search for bisphosphonate-related terms was noted mainly for non-scientific articles and websites [8].

It is noteworthy that the decline in osteoporosis medications use has also involved drugs other than bisphosphonates and has been observed also in high-risk patients. Recent data from US have reported a significant drop in the prescription of bone active agents (oral and parenteral bisphosphonates, calcitonin, denosumab, HRT, raloxifene, and teriparatide) from 2002 to 2011 in patients sustaining hip fracture [34, 35]. Reduction in the prescription of bisphosphonates was also described in Australia in the period 2006–2008, following the media report of ONJ and concomitantly with an increase in hip fracture incidence [36, 37, 38]. In the EU, a trend of reduction in the use of any osteoporosis medication was registered after 2008 [38]. Similar effects were observed for calcium prescriptions after results of the meta-analysis showing an increased risk of myocardial infarction were published on the lay press in 2010 [39, 40, 41].

Conclusions and expert opinion

An abundance of data show that alarming reports about osteoporosis medications in the news media have rapidly been followed by a reduction in the use of these medications, despite consistent evidence that the benefits of treatment far outweigh the risk of serious adverse effects in appropriately selected patients. The current crisis of osteoporosis care, with most patients who meet treatment criteria not being treated, is in part due to media reporting. The presence and/or absence of media reports (television, radio, the press, or Internet) can strongly influence the level of awareness of osteoporosis and fracture risk in the population worldwide.

Restoring public awareness of the fundamentals of osteoporosis management may be an effective strategy to clarify many “hot” issues and reduce the osteoporosis treatment gap. Table 1 summarizes the most relevant points to consider when taking care of patients with osteoporosis. Prevention of bone fractures is the main goal in the osteoporosis treatment. We suggest a renewed emphasis on educating the public on the serious consequences of fractures and the risk of fractures without treatment, as well as the balance of benefits and risks with treatment. Rare possible adverse effects, which often receive a great deal of attention in media reports, should be part of discussions with patients, but considered in the context of their likelihood compared with the expected benefits of treatment. Media reports that are balanced regarding benefits and risks can help patients and physicians to be well informed and make better treatment decisions. The news media can become partners in addressing important public health concerns, rather than obstacles. With the help of diverse types of information technologies, public health campaigns could increase public awareness of the disease, suggest methods to identify high-risk patients, and suggest strategies for primary and secondary fracture prevention.
Table 1

Points to consider when taking care of patients with osteoporosis

More attention to osteoporosis as a public health issue is needed

Communication with patients should include discussion of media reports that could have adverse effects on perceptions about the benefits and risks of osteoporosis treatment

Evidence-based information and patient-specific needs should guide the appropriate prescription of osteoporosis drugs rather than fear generated by alarming media reports

Dedicating more attention to effective communication with patients, including the use of information technologies, will positively impact the future of osteoporosis care

Public health officials and healthcare providers could take advantage of the demonstrated high influence that media (especially the Internet) have in virtually any area of medicine and increase the number of articles reporting useful and complete information, expert opinions, and guidelines that are understandable for patients. Patient-dedicated websites should be implemented and updated continuously. Involvement of general medicine practitioners, orthopedic surgeons and any other specialist dealing with high-risk patients, screening campaigns aimed primarily at an educational scope are other key points, as well as the communication with the lay press, particularly the most popular newspapers and magazines.

To our knowledge, no data are yet available on the number of media initiatives and campaigns on osteoporosis in comparison to other disease. In the US, media attention devoted to osteoporosis is scant compared with other disorders that are associated with less morbidity and mortality. This may be in part due to the role that non-profit organizations play in interacting with the media and developing disease awareness campaigns. As an example, Susan G. Komen, with about 1.5 million supporters in the US, spends about $35 million per year on breast cancer education, advocacy, and awareness, while the National Osteoporosis Foundation, with 44,000 supporters, spends $500,000–$700,000 per year for osteoporosis. As far as Italy, data from the Italian Health Ministry website give an idea on the current scenario of the media communication on osteoporosis. Over a total of 112 national campaigns sustained by the Ministry in the last 15 years, 10 were focused on HIV-AIDS, 7 on cancer, 3 on cardiovascular disease, and 2 on the generic topic of women’s health, where the issue of osteoporosis was debated, together with many other issues related to disease mostly affecting the women (http://www.salute.gov.it). The involvement of the public health authorities, together with the media and the scientific societies, is, therefore, of utmost importance to provide correct information on osteoporosis. Moreover, the presence of dedicated experts taking care of the communication with media and patients is a point that scientific societies, also those operating on a local basis, should consider. Finally, initiatives have started and should be further implemented towards the introduction of the metabolic bone disease in the core curriculum of the schools of medicine in any country.

It is also important to understand the pace at which new drugs are introduced into the market. Since 2013, five new breast cancer drugs have been approved by the FDA compared with one new drug for osteoporosis. Positive messaging about new drugs is heralded by patient advocacy groups, anticipating that the expected benefits of treatment will outweigh the potential risks in appropriately selected patients. When new cancer drugs are developed and launched, they are often described by the media in superlative [42], while media reports of osteoporosis drugs commonly highlight rare possible adverse effects. With the help of scientific societies dealing with metabolic bone disease, it would be of interest to obtain data on the number of media reports implementing the awareness on osteoporosis compared with those alarming on the safety concerns related to osteoporosis treatments. Adequate and complete information must, indeed, communicate safety concerns with osteoporosis medications, with the aim of sharing important information avoiding misperceptions, and assisting to individualization of treatment decisions [43]. For example, it is important to recognize the low absolute risk of AFF (3.2–50 cases/100,000 person-years) compared with the much higher risk of fracture in untreated patients with osteoporosis. Treatment with bisphosphonates would prevent 80–5000 fractures for every possible AFF associated with the therapy [44]. The proposed implementation of strategies aimed at the early diagnosis of AFF could have a leading role in patients’ and physicians’ education on this important topic [44].

Similar strategies of communication with patients and dental health professionals should be applied as far as ONJ. It should be clarified that ONJ is a very rare event, whose incidence is around 0.001–0.01% in patients with osteoporosis and the preventive measures aimed at ensuring a good dental hygiene should be improved, as valid for the general population. Regarding calcium supplementation, patients should be informed that recommendations clarified that there is no demonstrated relationship between calcium with or without vitamin D and the risk for cardiovascular disease [45]. Finally, no randomized-controlled trial has demonstrated any association between bisphosphonates and AF and specifically designed studies failed to demonstrate the presence of any correlation [46].

In conclusion, there is a large gap existing between clinical practice guidelines from scientific societies and their implementation in clinical practice. Better use of information technologies could help to reduce that gap. Benefits from involving the media in the diffusion of useful and balanced information have been demonstrated to be effective in other areas of medicine [47], and are applicable to the care of osteoporosis, as well.

Notes

Compliance with ethical standards

Conflict of Interest

Dr. Cipriani and Dr. Pepe have no financial disclosure and no conflict of interest. Prof. Minisola served as speaker for Abiogen, Amgen, Bruno Farmaceutici, Diasorin, Eli Lilly, and Fujii. He also served in advisory board of Abiogen. He received consultancy from Bruno Farmaceutici. In the past year, Prof. E. Michael Lewiecki has received institutional grant/research support from Amgen, PFEnex, and Mereo; he has served on scientific advisory boards for Amgen, Radius, Shire, Alexion, Ultragenyx, and Sandoz; he serves on the speakers’ bureau for Shire, Alexion, and Radius.

Ethical approval

This article contains studies with human participants performed by the authors where ethical approval was obtained.

Informed consent

Informed consent was obtained by all the participants of the aforementioned studies.

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© Italian Society of Endocrinology (SIE) 2018

Authors and Affiliations

  1. 1.Department of Internal Medicine and Medical DisciplinesSapienza University of RomeRomeItaly
  2. 2.New Mexico Clinical Research and Osteoporosis CenterAlbuquerqueUSA

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