The Risk Communication in Osteoporosis, or RICO, study aimed to understand patient preferences regarding the communication of fracture risk. Consideration of patient preferences in communications by healthcare professionals is crucial to increasing and facilitating patient involvement in clinical decision-making [17]. In the RICO study, a sample of 332 postmenopausal women with osteoporosis or at risk of fracture were recruited from 11 different sites around the world. Despite a great willingness to be informed about their fracture risk, only 56% of the women remembered having received such information from healthcare professionals. Although these results should be interpreted with caution, as some participants may not have remembered receiving information, this nevertheless highlights a significant communication gap between healthcare professionals and patients when discussing osteoporosis fracture risk. Despite the tools already available to estimate an individual’s fracture risk (i.e. FRAX® tool, Garvan Fracture Risk Calculator, and QFracture) [4] and the increasing importance of such tools in healthcare decision-making, the retention of information by patients and the quality of fracture risk communications remain suboptimal. Previous studies have already highlighted a lack of quality in fracture risk communication. In a qualitative study conducted in 2014, Sale et al. [7, 18] reported that patients often experienced a lack of interest by fracture clinics, receiving minimal communications. What messages patients did receive were not understood properly (e.g. patients could remember that they were at high risk, but did not believe it or did not know what they were at high risk for).

In 2018, Jakobsen et al. [19] also highlighted the importance of a patient’s medical history in understanding fracture risk. The authors reported, for example, that people who had never experienced a fracture could have substantial difficulty in appreciating the risk involved. This aspect was confirmed in our study, since—regardless of the method of communication—participants with osteoporosis or with a history of fracture were more concerned about their fracture risk as compared to those without such experiences. Granted that this result might be obvious, but it is still important for studies to be developed that test and confirm assumptions. A previous scoping review on fracture risk communication [4] provided some recommendations to healthcare professionals for improving communication to achieve an optimal patient-centred approach. It was suggested, among other things, that long-term knowledge of patients might be improved if healthcare professionals were to adapt their language to suit the patient’s history, needs, and health literacy. This suggestion is consistent with the qualitative findings reported by Jakobsen et al. [19].

The close and strong relationship between the quality of fracture risk communication and the initiation of osteoporosis treatment and adherence [7, 8, 20] compels the need for efforts to improve this communication. Decision aids are tools that support the implementation of shared decision-making in practice [17]. A Cochrane systematic review published by Stacey et al. [21] showed that people exposed to decision aids, using icon arrays, felt more knowledgeable, better informed, clearer about their values, and more active in their decision-making role. In the field of osteoporosis, Paskins et al. [22] used a systematic review and environmental scan to identify eleven different decision aids for fracture risk communication and treatment decision-making. These decision aids were found to be helpful in increasing the accuracy of risk perception, but only limited evidence was offered for improving treatment adherence in osteoporosis using these decision aids. In addition, the authors found that the available decision aids did not comprehensively meet international quality standards and patient needs. Later, Nogues et al. [23] reported that only five decision aids in the field of osteoporosis could be deemed to be completely comprehensive, as they effectively deliver pertinent information about the disease and present viable treatment options to patients. Therefore, the development of new tools and new decision aids is crucial for the field of osteoporosis and fracture prevention. Another noteworthy aspect to consider is the computer literacy of individuals with osteoporosis, who may struggle to use online tools. However, as the use of e-health technology and the publication of online information by healthcare professionals gradually becomes more common, patients are likely to find themselves engaging more frequently with such e-tools.

The results of our study revealed a strong preference for visual presentation of fracture risk versus a verbal/written communication without visual support. Sixty-one percent of the participants perceived the coloured traffic-light style graphs as the most understandable presentation of fracture risk. The coloured traffic-light graph was also the presentation most associated with motivating the initiation of medical treatment. Participants expressed an interest in the use of colours to inform them about the level of fracture risk (i.e. low, moderate, or high). Another study also found that this visual presentation of risk, using a stoplight colour system, was regarded by patients as the most clear and easy to read. Face arrays and pictograms, on the other hand, were considered more difficult to understand, as these formats make it harder for people to quickly ascertain their individual risk category [24]. Our study highlighted patient preferences for receiving information about the potential for reduction of their fracture risk by initiating treatment with osteoporosis medication. Therefore, to better reflect the benefits of treatment and encourage treatment initiation and adherence, it is advisable to contrast the outcome of fracture risk with treatment and without in patient communications. Last but not least, participants also expressed their desire to be informed about the more devastating consequences of fractures. They seemed particularly focused on the risks of losing the ability to walk, their independence, and, especially, their quality of life.

An awareness of all these patient preferences in fracture risk communications could help in the progress of new patient-decision tools. Participants were interested in the development of an online tool that could visually represent their individual fracture risk, as measured with fracture risk calculators such as the FRAX® tool [5, 10]. Because participants also expressed a willingness to talk directly with their healthcare professionals, the use of such an online tool should take place in an environment where patients and healthcare professionals work together to ensure a thorough understanding of the patient’s fracture risk and develop a treatment plan appropriate to the individual patient's situation, needs, and preferences.

An important aspect highlighted by the RICO study is the variation of patient preferences observed between countries. Such heterogeneity could be explained by differences from centre to centre, which could signal a need to adapt communication tools to local preferences. In our survey, we used US-specific cutoffs to define low, intermediate, and high fracture risk. However, the thresholds used for classification may be country- or age-specific, as suggested for the FRAX® tool, and it could be helpful to identify the thresholds at which a risk might be considered as low, moderate, or high. Furthermore, online tools have the advantage of having automated systems that can be adapted to accommodate patient or country characteristics. Given the results of our RICO study, for example, the use of colours is strongly recommended (apart from cases of colour blindness) to define risks as low, medium, or high. However, the interpretation of colours may be country-specific. For example, while populations in Western countries tend to view the colour red negatively as a warning, the colour red is viewed positively as an indicator of something good in countries like Japan.

Heterogeneity in preferences based on certain clinical characteristics was also observed between individuals. For instance, we observed that participants with osteoporosis and those with a history of fracture were more receptive to measures to reduce their fracture risk (i.e. lifestyle changes, medical treatment), regardless of the mode of communication used, whether visual or not. The use of visual aids may therefore be more useful for participants without osteoporosis or a history of fractures, as those patients may be more unaware of their fracture risk and less responsive communications concerning the consequences and benefits of treatment with osteoporosis medication.

Our study has several strengths. To the best of our knowledge, this is one of the first studies to investigate patient preferences for fracture risk communication, and the large number of participants from eleven sites around the world increases the external validity of the results. Moreover, we included patients with different educational backgrounds, and examined the role of numeric literacy on the results. In addition, the methodology used—that is, structured interviews with participants—ensures standardisation of data collection and reduces potential systematic bias.

Nevertheless, some limitations should be noted. First, the RICO study only included women, although osteoporosis also affects men, with approximately one in five men over 50 years of age suffering from this disease worldwide [25]. Men’s preferences for fracture risk communications should therefore also be considered. Second, although we used purposive sampling approach, the final sample may not be representative of the target population. Individuals who voluntarily participate in this type of research often have a different profile compared to the global population, as they may be more interested in the topic, more concerned about the risk, and have higher health literacy. Additionally, it is essential to acknowledge the variation in enrolment across sites. Although having a high-risk fracture was the primary inclusion criterion, women with low bone density who were interested and or concerned about their fracture risk were also included at some sites. Consequently, disparities have been observed between sites in the prevalence of osteoporosis, fractures, and medication usage. The discrepancies in preferences can therefore be partially attributed to these differences in enrolment procedures. Furthermore, significant variations have also been observed between sites in demographic characteristics (e.g. age, educational level, numeric literacy level). Therefore, some caution must be exercised when interpreting preference results, especially regarding differences between sites.

Third, the sample size within each study site is limited. This considerably diminishes the generalizability of the results for each country. It also prevents us from conducting subgroup analyses to better highlight participant characteristics that may influence preferences. Fourth, data analysed in the study were only based on patient-reported information and could thus be subject to bias at that level. For example, 83% of the population reported a diagnosis of osteoporosis but we were not able to verify this prevalence with accurate medical data. Fifth, the format of interviews may have impacted data collection, as some study sites performed exclusively online interviews whereas others performed exclusively face-to-face interviews, and still others carried out both. The choice of online or face to-face interviews was left to the local investigator and participants. It also depended on the computer literacy of the participants. Online interviews were tested during the pilot study and were shown to be feasible, although the real impact on results is difficult to ascertain.

Sixth, in this survey, we did not test participants’ actual understanding of presentations, but rather their perception of how easy they found it to understand. Therefore, we still do not know if the visual images/graphs were accurately interpreted [26]. Seventh, the guide was translated into different languages by one or two translators and checked by another researcher. However, no back translation was performed. While we do not expect this aspect to have influenced the results in any way, this limitation should be acknowledged for the sake of transparency. Finally, the differences observed between countries could not be fully explained by the methodology used in our study. For example, the fact that all participants, with the exception of those from Argentina, preferred the coloured traffic light system of graphs to other communication formats remains unexplained. Participants from Argentina do not present any particular characteristics that might allow us to develop hypotheses to explain this difference in fracture risk communication preference.