Pernille Ravn Jakobsen

Left in limbo – Experiences and needs among postmenopausal women newly diagnosed with osteoporosis without preceding osteoporotic fractures: A qualitative study:

Introduction Despite the fact that the first osteoporotic fracture is preventable, osteoporosis is still a major health challenge. The disease is highly prevalent among postmenopausal women. However little is known about how to meet and support women, when they are diagnosed with osteoporosis without preceding fractures. Therefore this study aims at gaining a deeper understanding of how women experience being diagnosed. Furthermore to describe and identify their needs, which should be met in future healthcare services. Methods We conducted a phenomenological qualitative study. We included 17 women aged 52–65 and collected data through semi-structured interviews. We analysed data following Giorgis methodology. Findings Needs among the women were classified into three main themes: (1) needs of targeted and tailored information about osteoporosis, (2) needs of being prepared for GP visit to participate in treatment decision-making and (3) needs of being able to take care of bone health. Conclusion and implications In general the women experienced as been left ‘in limbo’, and they requested targeted and tailored information about osteoporosis. In particular, they want information about dual-energy X-ray absorptiometry (DXA) scan results and treatment options in advance of the GP visit. This will help them in being prepared and able to participate in treatment decisions. They ask for support in self-management of the disease with less focus on disease and risk of fracture. Instead, they demand more attention on the benefits of detecting early stage osteoporosis. The study highlights the call for new approaches to postmenopausal women newly diagnosed with osteoporosis without preceding fractures.

Experiences of being diagnosed with osteoporosis: a meta-synthesis

SummaryThis systematic review provides synthesised knowledge and guidance to health professionals on the experiences and perspectives of being diagnosed with osteoporosis from the patient’s point of view. Using individuals’ experiences and meanings can promote tailored and targeted information and guidance on osteoporosis, bone care and treatment at different stages of the osteoporosis trajectory.IntroductionTo be diagnosed with osteoporosis with or without fragility fractures affects individuals differently. The aim of this review was firstly to aggregate existing qualitative evidence regarding an individual’s experience of being diagnosed with osteoporosis at different stages, and secondly, to use a systematic approach to develop a conceptual understanding of central issues relevant for health professionals in order to provide support and guidance to patients/individuals.MethodsThis study used a systematic review methodology and methods for qualitative synthesis as recommended by Cochrane and integrated the findings of qualitative research from eight databases (Medline, PubMed, CINAHL, Embase, SweMed+, PsycINFO, ERIC, Web of Science) to July 2016. Selection and assessment were performed by three authors while four authors were involved in the analysis. Findings were cross-checked with the original article to ensure consistency with the individual’s accounts.ResultsOur findings have revealed that individuals diagnosed with osteoporosis do not perceive osteoporosis as a biomedical trajectory but as a self-perceived continuum of severity and health. To be diagnosed with osteoporosis affects individuals differently depending on, for example, personal experience, pre-conceived notions of or knowledge about the disease, fragility fractures or pain. Hence, individuals will create a meaning of the diagnosis based on self-perceived fracture risk, self-perceived severity of osteoporosis and at the same time, self-perceived health.ConclusionsThis meta-synthesis provides knowledge for health professionals on the experiences and perspectives of being diagnosed with osteoporosis from the patient’s point of view. The experience, meaning and significance of osteoporosis must be taken into consideration and can be used to promote tailored and targeted information and guidance on osteoporosis, bone care and treatment at different stages of the osteoporosis trajectory.

Development of an mHealth Application for Women Newly Diagnosed with Osteoporosis without Preceding Fractures: A Participatory Design Approach

mHealth is a useful tool to improve health outcome within chronic disease management. However, mHealth is not implemented in the field of postmenopausal osteoporosis even though it is a major worldwide health challenge. Therefore, this study aims to design and develop an mHealth app to support women in self-management of osteoporosis when they are diagnosed without preceding fractures. Participatory design is conducted in three phases. Based on identified needs in the first phase, a prototype is designed and developed in an iterative process in the second phase before the mHealth app is tested in the third phase. This paper focuses on the user activities in phase two and describes how a team of researchers, women, physicians, healthcare professionals, and app designers are involved in the participatory design process. The study shows that participatory design is a viable approach when developing an mHealth app for women with asymptomatic osteoporosis. Results obtained from the workshops and laboratory tests demonstrate the importance of feedback from users in the iterative process, as well as the participation of users and app designers in workshops and laboratory tests to enable mutual learning when developing new mHealth solutions. The regular member-checks and involvement of users helped to identify challenges associated with providing healthcare services through an app.