Patients do not have a consistent understanding of high risk for future fracture: a qualitative study of patients from a post-fracture secondary prevention program

Sale, Joanna; Gignac, Monique A. M.; Hawker, Gillian; Beaton, Dorcas; Frankel, L.; Bogoch, Earl R.; Elliot-Gibson, Victoria

doi:10.1007/s00198-015-3214-y

Cited by 20 publications

(7 citation statements)

References 33 publications

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“…In addition, we found that the absolute fracture risk, expressed as a percentage, was often difficult to interpret for the patient as well as for the GP, and some patients felt the percentage was not high enough to start bisphosphonate treatment. The finding that patients have difficulties interpreting fracture risk was also found in another study [ 26 ]. Furthermore, a low risk perception was expressed by several patients as well as by GPs in our study and this might be partly caused by limited information on osteoporosis discussed during the medical consultation.…”

Section: Discussionsupporting

confidence: 65%

Factors related to intentional non-initiation of bisphosphonate treatment in patients with a high fracture risk in primary care: a qualitative study

et al. 2018

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BackgroundAdherence to osteoporosis treatment is crucial for good treatment effects. However, adherence has been shown to be poor and a substantial part of the patients don’t even initiate treatment. This study aimed to gain insight into the considerations of both osteoporosis patients and general practitioners (GP) concerning intentional non-initiation of bisphosphonate treatment.MethodsOsteoporosis patients and GPs were recruited from the SALT Osteoporosis Study and a transmural fracture liaison service, both carried out in the Netherlands. Using questionnaires, we identified non-starters and starters of bisphosphonate treatment. Semi-structured interviews were conducted to gain a detailed overview of all considerations until saturation of the data was reached. Starters were asked to reflect on the considerations that were brought forward by the non-starters. Interviews were open coded and the codes were classified into main themes and subthemes using an inductive approach.Results16 non-starters, 10 starters, and 13 GPs were interviewed. We identified three main themes: insufficient medical advice, attitudes towards medication use including concerns about side effects, and disease awareness. From patients’ as well as GPs’ perspective, insufficient or ambiguous information from the GP influenced the decision of the non-starters to not start bisphosphonates. In contrast, starters were either properly informed, or they collected information themselves. Patients’ aversion towards medication, fear of side effects, and a low risk perception also contributed to not starting the medication, whereas starters were aware of their fracture risk and were confident of the outcome of the treatment. Concerns about osteoporosis treatment and its side effects were also expressed by several GPs. Some GPs appeared to have a limited understanding of the current osteoporosis guidelines and the indications for treatment.ConclusionsMany reasons we found for not starting bisphosphonate treatment were related to the patients or the GPs themselves being insufficiently informed. Attitudes of the GPs were shown to play a role in the decision of patients not to start treatment. Interventions need to be developed that are aimed at GPs, and at education of patients.Electronic supplementary materialThe online version of this article (10.1186/s12875-018-0828-0) contains supplementary material, which is available to authorized users.

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Section: Discussionsupporting

confidence: 65%

Factors related to intentional non-initiation of bisphosphonate treatment in patients with a high fracture risk in primary care: a qualitative study

et al. 2018

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“…Investigating the causal pathways by which osteoporotic fractures may lead to preventable mortality is not simply an intellectually interesting exercise. Recent studies have documented persistent undertreatment of those with osteoporosis and recent osteoporotic fractures, declining use of pharmacologic fracture prevention therapies and underappreciation by patients as to why a recent fracture signals that they are at high risk for subsequent fractures and other adverse events . It is important that we establish, as best as we can, the extent and mechanisms by which prevention of fractures may delay mortality.…”

Section: What Proportion Of Post‐fracture Mortality Is Caused By the mentioning

confidence: 99%

“…Recent studies have documented persistent undertreatment of those with osteoporosis and recent osteoporotic fractures, (76,77) declining use of pharmacologic fracture prevention therapies (78) and underappreciation by patients as to why a recent fracture signals that they are at high risk for subsequent fractures and other adverse events. (79) It is important that we establish, as best as we can, the extent and mechanisms by which prevention of fractures may delay mortality. This will facilitate communicating cogent, convincing explanations ("connecting the dots") to patients at high risk of fracture, their health care providers, health care delivery organizations, and health care payers regarding the short-and long-term adverse effects (including mortality) of fractures and why their prevention is important.…”

Section: What Proportion Of Post-fracture Mortality Is Caused By the mentioning

confidence: 99%

Mortality After Osteoporotic Fractures: What Proportion Is Caused by Fracture and Is Preventable?

Schousboe

2017

Journal of Bone and Mineral Research

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“…Accurate perception of risk is crucial for the rational adoption of treatment. Communicating risk and benefit of pharmacological treatment to patients remains a great challenge [23]. Many tools and strategies [24], developed by investigators (such as the Mayo Clinic Osteoporosis Choice decision aid https://osteoporosisdecisionaid.mayoclinic.org/index.php/ site/index) and patient societies, aim to support decisionmaking; however, in our experience and as has been highlighted in recent publications [25], healthcare providers' messages about fracture risk are confusing to patients and much work is still required so that communications better suit patients' needs.…”

Section: Discussionmentioning

confidence: 99%

Patient engagement in clinical guidelines development: input from > 1000 members of the Canadian Osteoporosis Patient Network

et al. 2019

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Patient engagement in clinical guidelines development is essential. The results of a self-administered online survey identified themes important to people living with osteoporosis and will inform the development of Osteoporosis Canada clinical guidelines recommendations. Introduction Patient engagement is essential in the development of high-quality and relevant guidelines for osteoporosis management. Osteoporosis Canada (OC) is updating its national clinical practice guidelines in collaboration with people living with osteoporosis in the process. Methods Using electronic mail, we contacted 6937 members of the Canadian Osteoporosis Patient Network (COPN) to provide input on the selection of relevant content, outcomes, and research questions via a self-administered online survey. Close-ended questions were analyzed using descriptive statistics, and conventional content analysis was conducted for open-ended questions. Results A total of 1108 individuals completed the survey (97% women, 86% stated they lived with osteoporosis). Most participants considered it critical to have recommendations on physical activity and exercise (74%), fall prevention (69%), nutrition (68%), and initial bone mineral density testing (67%). In addition to preventing fractures, over 75% of respondents stated that consideration of preserving quality of life and ability to perform daily activities, preventing admission to long-term care and fracture-related death, and avoiding serious harms from medications were essential outcomes to consider in evaluating the evidence. In terms of selection of research questions, seven themes emerged from the content analysis including pharmacotherapy, screening and monitoring, diet and supplements, education, exercise, alternative therapies, and pain management. Conclusions Patients emphasized that autonomy, mobility, and quality of life are highly valued outcomes and must be integral to practice guideline development. As expected, guidance on pharmacotherapy, screening and monitoring, and fracture prevention were priorities identified to be included in osteoporosis management guidelines.

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Patients do not have a consistent understanding of high risk for future fracture: a qualitative study of patients from a post-fracture secondary prevention program

Abstract: Our results suggest that health care providers' messages about fracture risk are confusing to patients and that these messages need to be modified to better suit patients' needs.

Cited by 20 publications

References 33 publications

Factors related to intentional non-initiation of bisphosphonate treatment in patients with a high fracture risk in primary care: a qualitative study

Factors related to intentional non-initiation of bisphosphonate treatment in patients with a high fracture risk in primary care: a qualitative study

Mortality After Osteoporotic Fractures: What Proportion Is Caused by Fracture and Is Preventable?

Patient engagement in clinical guidelines development: input from > 1000 members of the Canadian Osteoporosis Patient Network

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