Experiences of postmenopausal osteoporosis: a narrative review

Abstract

Purpose

A narrative review was conducted to identify, critically appraise, and synthesise primary research on the lived experiences of postmenopausal women with osteoporosis.

Materials and methods

A systematic search of qualitative studies published between January 1960 and August 2021 was conducted across seven databases. The selected qualitative studies reported the lived experiences of postmenopausal women with osteoporosis, both with and without a history of fragility fractures.

Results

A total of 17 publications (n = 334) were identified. These results suggest that osteoporosis and fragility fractures significantly affected postmenopausal women’s lives. They reported difficulties in carrying out daily activities due to pain and change in their routines to cope with health problems. Some women were satisfied with the information provided by healthcare professionals. Their medicine adherence was also determined by their belief in the importance of their scheduled treatment for osteoporosis.

Conclusion

Qualitative studies that explored the lived experiences of postmenopausal women with osteoporosis can provide important insights into the impact of the disease on women’s lives and potential pathways for improving care and management.

Implications for rehabilitation

• Osteoporosis and fragility fractures affect the quality of life of postmenopausal women worldwide.

• The provision of targeted and tailored health information for postmenopausal women with osteoporosis is paramount in improving their health literacy and aiding in the long-term management of their bone health.

What is already known

• Osteoporosis and related fragility fractures are common, affecting more than 200 million people worldwide, including three million people in the UK.

• Osteoporotic fractures have significant clinical and public health impacts.

What this study adds

• Osteoporosis, particularly fragility fractures, has a significant impact on the lives of postmenopausal women, including pain and functional impairment.

• Women’s belief in the importance of their scheduled treatment plays a significant role in their concordance with the prescribed medications for osteoporosis.

• Provision of targeted health information for postmenopausal women with osteoporosis is key to their involvement in decision-making and disease management.

Keywords:

• Attitudes
• experiences
• fragility fractures
• narrative review
• osteoporosis
• postmenopausal women

Introduction

Osteoporosis is a major public health condition affecting more than 200 million people worldwide [1,2]. It is defined as a skeletal disease characterised by low bone mass and microarchitectural deterioration of bone tissue, leading to enhanced bone fragility and a consequent increase in the risk of fractures [3]. Osteoporosis is an age-related health condition with a prevalence of approximately 2% at 50 years to more than 25% at 80 years [4]. Fragility fractures are a common complication of osteoporosis, and it is estimated that one in two women over the age of 50 will sustain a fragility fracture during their remaining lifetime [5].

Hip, wrist, and spine fractures are the most frequent fractures associated with osteoporosis and are associated with significant morbidity, mortality, and healthcare costs [6–8]. Hip fractures are one of the most disabling consequences of osteoporosis [9]. The estimated lifetime risk of hip fracture in women aged ≥50 years varies between 9.8% and 22.8% [1]. Mortality associated with hip fractures (10%–20%) is very high, in part because of complications arising from hip joint surgery and comorbidities associated with osteoporosis [9]. Significant morbidity is also associated with hip fractures, including impaired mobility and increased dependence, with 50% of patients requiring help with daily living activities and 15%–25% entering long-term care facilities [10,11].

To date, most studies on the disease’s effects or personal impact on women have been based on questionnaire surveys and focused on specific outcomes, including pain and disrupted functioning [12]. In contrast, there are relatively few studies that explore postmenopausal women’s lived experiences of the disease, and those studies focus on the context of experience, choice, and knowledge gained [13]. Access to participants’ lived experiences offers researchers a powerful tool for gaining insight into the meaning of said experiences [13]. However, until now, there has been no attempt to summarise or synthesis the literature surrounding this important area.

This review aims to identify and summarise published qualitative studies that consider the lived experiences of women with osteoporosis and/or fragility fractures and to serve as a basis for future research in the field of osteoporosis.

Materials and methods

Design

This is a narrative review [14]. This approach provides greater potential for individual insight and opportunities for speculation in literature than quantitative review approaches. It may, therefore, guide healthcare professionals in the management and provision of quality care to patients with osteoporosis.

Authors’ roles in the review process

The first author (FZ) screened the titles and abstracts, identified studies, completed data extraction, performed a quality assessment for each study, conducted data analysis, and developed themes from the review and organised these into the themes matrix. The second and fourth authors (JB & ES) assessed the final list of the included studies and discussed any discrepancies until consensus was reached. They also checked the data extraction tables for accuracy and completeness. Furthermore, FZ, JB and ES met online to resolve any initial conflicts. JB and ES further reviewed the theme matrix and discussed discrepancies until consensus was reached.

Search of key terms

The same keywords were used across all the included databases; however, the truncation and wildcards differed slightly in MEDLINE through Ovid and other databases, as shown in Supplementary Appendix 1. The search terms used in this review included postmenopausal, postmeno*, post menopaus*, postmenopaus*, exp Postmenopause, exp Menopause, menopaus*, exp Osteoporosis, Postmenopausal, exp Osteoporosis, osteoporo*, bone adj2, loss* or fragil* or weakness* or tear* or break* or density or mass), bone adj2 short*, fracture*, experience* or perception* or perceive* or view* or opinion* or attitude*, exp Attitude to Health, exp Qualitative Research, qualitative and Female.

Inclusion criteria

Publications were included in the review if (i) they were original research studies and included data obtained from interviews or focus groups with study participants, (ii) they focused on the lived experiences of postmenopausal women with osteoporosis/fragility fractures, (iii) they employed a qualitative research approach for data collection, and (iv) they were written in English. Unpublished research data (grey literature) were not included. Databases were searched for studies published from January 1960 to August 2021.

Information sources and search methods

FZ developed the search strategy and the three authors (JB, TO, and ES) reviewed it for accuracy and completeness. Databases searched for relevant publications included MEDLINE (Ovid), Embase, PsycINFO: Cumulative Index to Nursing and Allied Health Literature (CINAHL), PubMed, Applied Social Sciences Index, and British Nursing Index. Publications that satisfied the inclusion criteria were included in this review. The reference lists of the identified publications were reviewed to determine additional eligible publications; two additional eligible publications were identified from the reference lists and included in the final review. However, these two records were not identified in the original search of the databases.

Study selection

The titles and abstracts of studies identified in the initial search were screened by FZ. Studies considered potentially eligible were read in full, and those satisfying the inclusion and exclusion criteria were retained. Thereafter, JB and ES assessed the final list of included studies. Differences were addressed through reassessment and discussion of discrepancies until the reviewers’ reached consensus.

Data extraction

FZ completed data extraction for each included study. JB and ES checked the data extraction tables for accuracy and completeness. The following information was extracted from each study: study, country, aim, design, sample, method, setting, and key findings. The outcome of interest was postmenopausal women’s experience with osteoporosis and/or low-trauma fragility fractures.

Search outcomes

The database review yielded 391 research records, of which 15 met the final inclusion criteria. Two additional eligible studies were identified by reviewing the reference lists of studies found in the search. The literature search’s process and results are shown in Figure 1 (adapted from the Preferred Reporting Items for Systematic Reviews and Meta-Analyses 2009 flow diagram [15]). A summary of the 17 publications included in the review and the key findings from these studies are presented in Table 1.

Figure 1. Example of a study selection process. Flow diagram of the study selection process based on PRISMA [15].

PRISMA flow diagram of the study screening and selection process. Study selection was conducted in accordance with PRISMA guidelines for reporting systematic reviews [15].

Table 1. Summary of the included studies.

Study, country	Aim/s	Design	Sample	Method	Setting	Key findings/
Paier [34], USA	Refer to the thematic analysis section (pages 10–17)	Descriptive phenomenology	Purposive sample of five white women aged 58–86 years who experienced spinal fractures	Semi-structured interviews	Retirement community in Northeastern USA (4) and Southwestern city (1). Interviews conducted in investigator’s office and participants’ homes	Refer to the thematic analysis section (pages 10–17)
Unson et al. [31], USA	Refer to the thematic analysis section (pages 10–17)	Qualitative	Convenience sample: 55 women diagnosed with osteoporosis, aged 60–91 years	Focus group interviews	New England, USA	Refer to the thematic analysis section (pages 10–17)
Reventlow et al. [30], Denmark	Refer to the thematic analysis section (pages 10–17)	Qualitative	Purposive sample: 16 women (aged 61–63 years) who had had a bone density scan	In-depth interviews. Two sets of semi-structured interviews with the use of a topic guide during 1997–2000	Participants’ homes	Refer to the thematic analysis section (pages 10–17)
Reventlow [37], Denmark	Refer to the thematic analysis section (pages10–17)	Qualitative	Purposive sample: 14 participants aged 63–64	In-depth interviews using topic guide questions. Repeat interview 1–2 years later	Mainly participants’ homes	Refer to the thematic analysis section (pages 10–17)
Hjalmarson et al. [29], Denmark	Refer to the thematic analysis section (pages 10–17)	Qualitative, grounded theory research	Purposive sample: 13 postmenopausal women aged 60–81 years with osteoporosis and fractures	Semi-structured in-depth interviews	Participants’ homes or at a primary healthcare centre	Refer to the thematic analysis section (pages 10–17)
Lau et al. [28], Canada	Refer to the thematic analysis section (pages10–17)	Qualitative, mixed phenomenological study	A purposive sample of 37 postmenopausal women aged 60 or older currently taking at least one prescription/over-the-counter medicine for osteoporosis	Seven focus group discussions were conducted using a semi-structured interview guide, consisting of ten open-ended questions	Hamilton, Ontario, Canada	Refer to the thematic analysis section (pages 10–17)
Hallrup et al. [36], Sweden	Refer to the thematic analysis section (pages 10–17)	A qualitative phenomenological approach	13 women age 76 to 86 years with low trauma fractures	Semi-structured interviews	Participants’ homes	Refer to the thematic analysis section (pages 10–17)
Hallberg et al. [33], Sweden	Refer to the thematic analysis section (pages10–17)	Qualitative phenomenological study	Purposive sample of 10 women aged 68–84 years with vertebral fractures	Semi-structured interviews	Interviews conducted at participants homes or the first author’s office	Refer to the thematic analysis section (pages 10–17)
Salter et al. [27], UK	Refer to the thematic analysis section (pages 10–17)	Qualitative study	A purposive sample of 30 women aged 73–85 years recently screened for osteoporosis and informed that they are at a higher-than-average risk of breaking a bone in the next 10 years.	Semi-structured interviews with interview guide questions.	Participants’ homes	Refer to the thematic analysis section (pages 10–17)
Sale et al. [35], Canada	Refer to the thematic analysis section (pages 10–17)	Phenomenological study	A purposive sample of 15 women aged 65–88 years who had different types of fractures (wrist / hip/ shoulder/ ankle / patella / pelvis)	Semi-structured interviews	Ontario Participants homes, researcher’s office or by telephone	Refer to the thematic analysis section (pages 10–17)
Nielsen et al. [26], Denmark	Refer to the thematic analysis section (pages 10–17)	Phenomenological study	20 women aged 52–84 years with a diagnosis of osteoporosis, confirmed by DXA scan	Semi-structured interviews and participant observation	Interviews were conducted in the hospital clinic of two hospitals: Odense University Hospital in Denmark and Nottingham University Hospitals	Refer to the thematic analysis section (pages 10–17)
Hansen et al. [25], Denmark	Refer to the thematic analysis section (pages10–17)	Qualitative study, (phenomenological hermeneutic approach)	15 women aged 65–79 years whom recently diagnosed with osteoporosis though without any history of previous osteoporotic fractures	Two sets of in-depth interviews: the first one shortly after diagnosis, and the second one 6 months later	Two hospitals in two different regions in Denmark. Interviews were conducted in participants’ home and hospital	Refer to the thematic analysis section (pages 10–17)
Alami et al. [24], France	Refer to the thematic analysis section (pages10–17)	Qualitative, grounded theory research	A purposive sample of 37 postmenopausal women, aged 50–87 years. 16 had a history of fragility fractures	Semi-structured interviews and focus groups.	Tarnier-Cochin Hospital in Paris. Interviews took place in participants’ homes or at sociologists offices	Refer to the thematic analysis section (pages 10–17)
Svensson et al. [32], Sweden	Refer to the thematic analysis section (pages 10–17)	Qualitative phenomenological hermeneutical approach	Purposive sampling of ten women aged > 65 years, diagnosed with one or more osteoporotic vertebral compression fractures with subsequent pain and reduced physical function	Semi-structured interviews	Outpatient clinic in Gothenburg, Sweden. Interviews conducted in participants’ homes	Refer to the thematic analysis section (pages 10 − 17)
Hansen et al. [23], Denmark	Refer to the thematic analysis section (pages 10–17)	Qualitative study, longitudinal (phenomenological hermeneutic approach)	15 women aged 65 and older with recently diagnosed osteoporosis	Semi-structured interviews	Two hospitals in two different regions in Denmark. Interviews were conducted in participants’ home and hospital	Refer to the thematic analysis section (pages 10–17)
Jakobsen et al. [22] Denmark	Refer to the thematic analysis section (pages10–17)	Phenomenological study	A purposive sample of 17 postmenopausal women aged 52–65 years whom newly diagnosed with osteoporosis without history of osteoporotic fractures	Semi-structured interviews using an interview guide	Danish University Hospital, Denmark Interviews took place in participants homes	Refer to the thematic analysis section (pages 10–17)
Nilsson et al. [21], Sweden	Refer to the thematic analysis section (pages10–17)	Phenomenological qualitative study	A purposive sample of 11 postmenopausal women aged 58–78 years diagnosed with osteoporosis, aged 58–78 years	Semi-structured interviews with the use of an interview guide	Participants’ homes	Refer to the thematic analysis section (pages 10–17)

Note: Data extraction.

Quality assessment of research articles

The Joanna Briggs Institute Qualitative Assessment and Review Instrument was used to assess the quality and congruency of the individual studies’ findings [16]. Hannes et al. identify this as the most coherent instrument when compared with two other critical appraisal tools for qualitative studies because the criteria were aligned with the trustworthiness criteria of qualitative studies [17]. Lincoln and Guba recommend criteria to establish confidence in the synthesised findings [18]. Supplementary Appendix 2 presents the results for the instruments used in the included studies.

The ConQual approach to establishing confidence in qualitative synthesis was used to rank the findings of individual studies [19]. This ranking system allows grading of individual studies’ findings based on their dependability and credibility. Although Lincoln and Guba [18] highlight other concepts (such as transferability and confirmability), it is the view of the Joanna Briggs Institute working group that these do not explicitly align with their notion of “confidence (i.e., truth value)” and are more aligned to the concepts of “applicability” and “neutrality” [18]. Supplementary Appendix 3 shows the rankings for dependability and credibility of the included studies.

Themes matrix and the process of identification of the themes of this review

The matrix method of literature review is a logical and practical tool that forms the initial context to guide researchers in refining their research focus [20]. FZ read the review papers to familiarise herself with the dataset to generate codes. She then analysed, combined, and compared codes to identify the relationships among them. Consequently, she developed themes for this review and organised them in the theme matrix. Following this, JB and ES independently reviewed the theme matrix. Differences were addressed by discussing discrepancies until consensus was reached between the reviewers. All the themes included in the matrix were relevant to the review’s aims. The most common and repeated themes in the matrix were considered as the key themes of this review. Table 2 shows an example of the data extraction process from one study and Table 3 shows the theme matrix.

Table 2. Example of the data extraction process using one study.

Study	Themes/ categories	Subthemes	Second order constructs	First-order constructs
Hansen et al. [23]	Theme 1: To become influenced by the medical treatment	Subtheme 1.1. Medication concordance Subtheme 1.2. Discontinuing the medication	Taking the medication was described as a challenge, particularly the first time the medication was taken. The action was influenced by concerns about side effects and other negative thoughts, but with a clear willingness to take the prescribed medication Discontinuing the medication as a process based on experiences during the first year after diagnosis.	P5 ‘the first time I took it I thought it was such an execution pill, probably a really strong one. I decided to take it Friday morning before the weekend. I bought a green box and I dispensed for a week. On Fridays, I have attached a big red star. The star tells me I cannot eat or drink anything before or lie down and all that’ P12 ‘I take it Saturday morning when I get up. I go for a walk, take a shower or walk back and forth. Then that hour has lapsed’ P13 ‘I get infusions. It’s only once a year and it is in May. I’ve only got it twice so far. I feel no side effects or anything’ P3 ‘I did find an article. There I read about making the dentist aware of it. It has something to do with the healing process of the jaw. If they [the tablets] are uncomfortable in some ways’ I am not sure (pause). I believe the medicine is a little harsh’ P15 ‘I felt weird in my stomach …. I did not sleep well the first nights …. Maybe it’s mental, but I really don’t like taking them. I got the feeling that they were unpleasantly rough to my stomach …. Then I stopped taking them. I was wondering if they are so harsh, is it then worth taking them?’ P3 ‘I’ve got heart problems ..it has overlapped with it [osteoporosis]. It is more important that the heart beats than I might have to sit in a wheelchair. I have chosen not to take the medication [anti-osteoporotic]. I am instead trying to do everything else to strengthen my bones’ P11 ‘I’m not bothered by anything. I do not take those stupid pills. No, I don’t. I hate pills. The GP who gave them to me said that I might get side effects. I said you know what? I do not want them it works just fine’…. on the other hand, I am very (pause) I obey the doctor [she bought them anyway]’.
	Theme 2: Daily life with osteoporosis	Subtheme 2.1. Interpretation of symptoms Subtheme 2.2. Interpretation of the scan results Subtheme 2.3. Lifestyle reflections	The sub theme ‘interpretation of symptoms’ contains experiences relating to the interpretation of osteoporosis through finding explanations and developing understanding of the evolution of increased or reduced symptoms or side effects of medication, back pain and other physical symptoms. The diagnosis generates a cognitive process which brings a new perspective when learning to live with osteoporosis. In addition, trust that the physician will ably provide help in understanding and interpreting the symptoms also appeared. Learning to live with osteoporosis is found to be based on an acceptance of the diagnosis generated through understanding the symptoms as being related to osteoporosis. This process began shortly after the diagnosis. This subtheme contains descriptions of the interpreted value along with the understanding of the scan result. In several cases, it appeared to be difficult for the women to understand the results of their scan. This subtheme was found to mediate the acceptance and adaption to learning to live with osteoporosis. This was focused on changes related to diet and physical activity. The fear of possible future consequences of osteoporosis was found to both mediate and challenge the acceptance process. Exceptions were found in a small number of women who appeared to be occupied with other issues, such as having severe comorbidity, taking care of an ill spouse or perceiving it as a ‘natural thing’	P1 ‘Its [osteoporosis] apparently something that come sneaking …I have not been able to understand why I got sore back again and again. I have had back pain as if it explodes’ P10 ‘My GP has promised to help me find out about the pain I have. Whether it is associated with osteoporosis or whether it is something else …. He has to tell me what to do… I have experienced that on can learn to liv with pain. I am not just sitting in a chair’ P9 ‘I’ve been so ill, so I couldn’t even pull the quilt up. Finally, I got it, ‘forsteo’. I have taken it for a year now. The past one and a half months I sometimes wake up in the morning without having backache’ P14 ‘Approximately three years ago I decided to get it [osteoporosis] examined, I was over the line, but far down [on the scale]. In this fall I got it reassessed the numbers [from the DXA scan result] were almost the same but finally it was addressed .. they said I have osteoporosis’ P2 ‘In December I’ll have to sign up for a new scan. Then we’ll see if it shows any changes. Some improvement hopefully (pause) or maybe there has been very little change’ P8 ‘I am confused; I do not know what might harm. I want to do preventive things as much as possible. Does it take ten years to develop a fracture or how fast? How unfortunate can I be? Will something suddenly break? Many people are having pain. That is turning around in my head after I have been told that I have osteoporosis’ P15 ‘I have always been exercising, I have been eating healthy and I do not smoke and do not drink. I think I have done what I could to have a healthy life. I am always thinking whether I get enough calcium. At the pharmacy they say I have to take three tablets a day, otherwise I have been told that I have to take two a day, what I am supposed to do?..I am sort of pushing it in front of me all the time Am I doing it right? Am I generating a hunched back or get a fracture? What will happen?’ P6 ‘We’ve good life. He [the husband] is not able to talk. He has aphasia and a half -side paralysis. His mood is good. We have learnt to live with that side of our lives, and that is more important than osteoporosis …I do not know what to do about it, so I don’t do anything. I missed instructions. I hardly know what osteoporosis is. That’s probably why it does not make as much impressions on me’

Note: Data extraction using participants quotes.

Table 3. The theme matrix.

Themes of the narrative review	Relevant themes/quotes from the included studies	Included studies
Accepting and learning to live with osteoporosis	Being on the path of learning to live with osteoporosis	Hansen et al. [25]
	Understanding the scan results were perceived as being of significance for the acceptance of the diagnosis	Jakobsen et al. [22] Reventlow et al. [30]
	‘I was less surprised than I would have been having a family who obviously had it but we didn’t know what it was called then you see.’ (IV06)	Salter et al. [27]
	‘accepted it as part of getting older’ (IV01)	Salter et al. [27]
	As IV14 put it, despite being initially surprised she accepted it rationalizing that having the knowledge ‘saves falling and breaking’	Salter et al. [27]
	Awareness of the need to adapt	Jakobsen et al. [22]
	Everyday life is influenced by the way treatment is handled	Hansen et al. [25] Hansen et al. [23]
	Learning to live with osteoporosis is found to be based on an acceptance of the diagnosis generated through an understanding of symptoms	Hansen et al. [25] Hansen et al. [23]
	Women expressed that they should try to manage on their own and not fall	Reventlow et al. [30]
	Accepting having fragile bones	Hjalmarson et al. [29]
	Perceived osteoporosis as a natural bone deterioration owing to aging	Alami et al. [24]
	Promotion of bone health in daily life was one aspect of learning to live with osteoporosis	Reventlow [37]
Living with pain	Grappling with the forces of pain	Paier [34]
	Breakthrough pain fuelling fear Pain and inconvenience of a fracture	Svensson et al. [32]
	Women described constant back pain as terrible/horrible	Hallberg et al. [33]
	Women described the pain as all over the body	Reventlow et al. [30]
	Repeated experiences of sore back pain	Hansen et al. [23]
	Women’s experience of painful fracture Pain is one of the symptoms of osteoporotic fracture Vertebral fractures lead to back pain	Alami et al. [24]
Concordance with osteoporosis treatment	Decision required minimal contemplation (easy decision). In this group, participants made their decisions based on trust in their health care provider rather than trust in OP medications. Decision required considerable contemplation (difficult decision). Participants classified under this group described the decision to take or not take OP medication as more difficult	Sale et al. [35] Unson et al. [31]
	Taking the medication	Hansen et al. [23]
	Discontinuing the medication	Hansen et al. [23]
	Belief in the importance of taking medications for osteoporosis Medication-specific factors	Lau et al. [28]
	Most women initially accepted prescribed treatment	Nielsen et al. [26] Hallrup et al. [36]
	Medication and treatment were important parts of handling OP – not all patients found it easy to handle	Unson et al. [31] Lau et al. [28] Hansen et al. [23]
	Women might take the prescribed bone-strengthening medicine, yet doubt its effect	Unson et al. [31]
	Anti-osteoporotic treatments generated more fear, while vitamin D and calcium supplements were viewed as beneficial Non-adherence to general lifestyle recommendations	Alami et al. [24] Salter et al. [27]
Need for information	Needing to learn	Hjalmarson et al. [29]
	Influence and need for understanding	Lau et al. [28]
	Information on osteoporosis Causes of osteoporosis Understanding and interpretation of information and medical advice	Alami et al. [24]
	Learn from health care professionals Information exchange	Hansen et al. [23]
	Not getting the information needed from the GP and other health care professionals	Hallberg et al. [33]
	Handled knowledge about osteoporosis to manage everyday life	Nielsen et al. [26]
	Needs of targeted and tailored information about osteoporosis	Jakobsen et al. [22]

Note: Thematic analysis.

Results

Studies included in the review

Of the publications included in the review, ten used a phenomenological approach, five applied a generic qualitative approach, and two applied grounded theory methodology. Most studies were conducted in Denmark (n = 6) and Sweden (n = 5), while the others were conducted in the USA and Canada (n = 2 each) and the UK and France (n = 1 each). No studies were conducted in the Middle East or Asia. The sample size ranged from five to 55 postmenopausal women. A total of 271 postmenopausal women had osteoporosis without a history of fracture, 27 had vertebral fractures, and 36 had other fragility fractures. None of the reviewed studies reported the duration between menopause and fragility fractures. Most of the included studies (n = 14) adopted semi-structured one-on-one interviews as a method of data collection, while two studies adopted focus group interviews and one study used both semi-structured and focus group interviews.

Eleven studies explored the experiences of postmenopausal women with osteoporosis without preceding fragility fractures [21–31]. Three studies explored the experiences of postmenopausal women with vertebral fractures [32–34], and one study explored the experiences of postmenopausal women with and without vertebral fractures [29]. Four studies explored the lived experiences of postmenopausal women with a range of non -vertebral fractures, though the analysis did not distinguish between the individual fracture types [24,35–37]. Another study focused on women with osteoporosis with and without other fragility fractures [24].

Key themes

Four themes repeatedly appeared in the individual publications: accepting and learning to live with osteoporosis, living with pain, concordance with osteoporosis treatment, and need for information.

Eight studies focused on accepting and learning how to live with osteoporosis [22–25,27,29,30,37]. Six studies focused on living with pain [23,24,30,32–34]. Nine studies highlighted the theme of concordance with osteoporosis treatment [23–28,31,35,36]. The need for information was explored in seven studies [22–24,26,28,29,33].

Thematic analysis

Accepting and learning to live with osteoporosis

Issues related to learning to live with osteoporosis centred on postmenopausal women’s acceptance of their diagnosis, generated through an understanding of osteoporosis symptoms [23,25]. Some newly diagnosed postmenopausal women with osteoporosis experienced difficulty accepting their diagnosis, whereas others accepted it immediately. Earlier, acceptance from patients was attributed to a trusting relationship between their physicians and the healthcare system from which they received information regarding their condition [23]. Women who had difficulty accepting their diagnosis appeared to be less trusting of their physicians and health care system; they often perceived osteoporosis as a sign of ageing and feared being dependent and a burden on others [23,27]. In a review of French women, Alami et al. uses a grounded theory approach and reports that they perceived osteoporosis as natural bone deterioration [24]. This helped them come to terms with their conditions. Furthermore, women who admitted that osteoporosis was a common aspect of ageing accepted their diagnosis and learned to live with it more easily than women who perceived osteoporosis as an illness and subsequently had difficulty accepting and living with it.

Some women with osteoporosis felt that they were adequately cared for by their general practitioner, who clearly explained their diagnosis and medical treatment options [25]. This appears to have helped them learn how to live with osteoporosis. Others felt that their general practitioner consultation lacked clarity in the diagnosis and was insufficiently thorough or informative [24,25]. The provision of sufficient information/education from general practitioners plays a central role in women’s journeys to learn to live with osteoporosis [24,25].

Women who requested bone scans owing to family histories of fragility fractures were more psychologically prepared for the osteoporosis diagnosis than those without family members diagnosed with fragility fractures [22,30]. Salter et al. explore the experiences of postmenopausal women screened for osteoporosis based on their age, smoking history, alcohol intake, and parental history of hip fractures [27]. Those diagnosed with osteoporosis were sometimes surprised by the results because of the condition’s asymptomatic nature or because they had maintained a healthy lifestyle by exercising regularly or never smoking or drinking [27]. Several women in Reventlow’s [30] phenomenological study reported that after bone scans revealed their condition, they reorganised their lifestyle as they perceived their body as weak and fragile. Their family members developed similar perceptions, which resulted in them gaining further support in daily activities. The promotion of bone health in daily life is one aspect of learning to live with osteoporosis, which results in greater caution, such as avoiding weight-bearing activities and choosing to swim or cycle as alternative exercises that may put less stress on bones [37].

Living with pain

Various studies explore lived experiences of pain in postmenopausal women with osteoporosis [23,24,30,32–34]. In a hermeneutic study, Hansen et al. explore the lived experiences of 15 postmenopausal Danish women with osteoporosis [23]. One participant described her back pain as “apparently something that comes sneaking”, which prevented her from performing their daily activities, such as walking, cooking, and exercising [27, p.7]. Participants in this study described learning to live with osteoporotic pain as part of their understanding of osteoporosis symptoms [23]. Although the informants in the studies conducted by Hansen et al. [23] and Hallberg et al. [33] described back pain as a distressing experience, the informants in Hansen et al.’s study were not sure whether their back pain was associated with osteoporosis or whether it was something else. In a qualitative study by Hallberg et al. postmenopausal Swedish women described their pain as “horrible, a totally unnatural life-dominating pain that you never forget” and “prolonged and very special that affected one’s whole life” [33, p.3]. Hallberg et al. [33] recruited a purposive sample of ten postmenopausal women with multiple vertebral fractures (different age groups, marital status, and number and severity of vertebral fractures), whereas Hansen et al. [23] recruited postmenopausal women newly diagnosed with osteoporosis and without any fragility fractures.

In a grounded theory study, Alami et al. [24] use triangulation of semi-structured individual and focus group interviews with 37 postmenopausal women to explore their perceptions of osteoporosis. Although these women perceived fractures to be highly linked to a severe level of pain, they considered that other factors also elevated the pain level, such as ageing and other illnesses [24]. These findings are somewhat like those of Reventlow et al. [30], in which postmenopausal Danish women with osteoporosis reported that osteoporosis pain seemed invisible to others when there was no fracture. In both studies, postmenopausal women highlighted the aspect of invisible or minor pain in the absence of fragility fractures [24,30].

Using a phenomenological hermeneutic approach, Svensson et al. [32] explore ten postmenopausal Swedish women’s experiences of living with osteoporotic vertebral compression fractures. Most of these women provided in-depth descriptions of their experiences of night-time pain. They described night as troublesome in that sometimes they could not sleep because of severe pain unrelieved by pain medication [32]. Women reported managing breakthrough episodes of pain by balancing rest with simple activities [32]. Although many women used pain-relief medication, they expressed low confidence in its effectiveness [32,34] and reported that they considered pain a constant companion to which they had become accustomed [32].

This finding is consistent with those reported in Paier’s descriptive phenomenological study conducted in the USA. The informants described their pain as “the worst pain they had ever experienced” [34, p. 30] and how it restricted their daily activities, leading to a decrease in function because of continuing pain [34]. These women stated that continuous pain affected their sleep normally, causing fatigue and contributing to their inability to resume normal activities after their vertebral fractures [34]. They also reported that chronic severe pain affected their social activities and interactions, which prevented them from socialising with family members and friends [34].

Although pain was the most congruent theme in the included studies [23,24,30,32–34], the diversity of pain levels experienced might be owing to the presence or absence of osteoporotic fractures. This is supported by the fact that women diagnosed with vertebral fractures experience a severe level of pain [36–38] as opposed to women who had no fracture history [23,24,30].

Concordance with osteoporosis treatment

Concordance with osteoporosis treatment has been linked to a reduction in fracture risk [26]. Despite this strategy’s effectiveness, the literature shows that concordance with osteoporosis treatment is a common challenge faced by postmenopausal women worldwide [23–28,31,35,36].

Hansen et al. [23] conducted a longitudinal qualitative study to gain a deeper understanding of how women learn to live with osteoporosis. Three sets of interviews were conducted: the first at diagnosis, the second after 6 months, and the third year after diagnosis. According to this study, postmenopausal Danish women with osteoporosis were reluctant to take osteoporosis tablets because they were unhappy with the medication side effects. This finding was similar to those of the qualitative studies by Unson et al. [31] and Lau et al. [28], in that participants in both studies had a lack of trust in osteoporosis medications because of experiencing severe side effects, such as: “Oh my God! That is harming me, I will not take it again” [31, p.1040]. In contrast, Hallrup et al. [36] and Nielsen et al. [30] report that postmenopausal women showed a high level of concordance to anti-resorptive agents. They also state that additional medications were sometimes administered to treat the side effects of anti-resorptive agents. The differences in these studies’ findings could be accounted for in several ways, including knowledge, attitude toward therapy, a trust relationship with healthcare professionals, and fear of sustaining further fractures. The age differences between these two groups may also have affected the findings in that the postmenopausal women in Hallrup et al.’s study [36] were older than those in Hansen et al.’s study [23].

Several researchers explore the reasoning and attitudes underlying medication adherence [24,26,28,31,35]. Unson et al. [31] and Sale et al. [35] highlight that postmenopausal women with osteoporotic fractures related their adherence to taking osteoporotic medications to their relationship with healthcare providers. Women who trusted their general practitioner or specialist’s expertise and knowledge adhered to their osteoporotic medications, whereas those who did not trust their healthcare providers were less likely to do so. Unson et al. [31] include women from three different ethnic groups: African-American, non-Hispanic white, and Hispanic. Sale et al. [35] recruited women of the same ethnicity. Despite the different methodologies and populations studied, the findings of Sale et al. [35] and Unson et al. [31] are consistent.

Nielsen et al. [26] attributes adherence to medications to guilt and fear because women with fear of sustaining new fractures adhered to their medications. In contrast, the studies by Unson et al. [31] and Lau et al. [28] on postmenopausal Canadian women with osteoporosis report that women discontinued or refused to take their medications based on what they heard in the media or on what their friends or family members said about personal experiences.

Alami et al. [24] also report that the perceptions and beliefs of postmenopausal French women regarding osteoporosis play a role in their adherence to medications, diet, and exercise. Women who perceived osteoporosis as a disease with serious risks in terms of dependence were considered to have dramatised their condition and adhered more firmly to their osteoporotic medication. In contrast, women who believed that osteoporosis was simply “a disease” were considered “relativised,” and these women were less likely to adhere to prescribed medication regimens [24].

The literature shows some variability in the types of treatments administered to postmenopausal women. Salter et al. [31] and Alami et al. [24] emphasise that postmenopausal women differentiate between three types of treatment: general health advice, supplements, and anti-osteoporotic medications. Both studies find that postmenopausal women did not adhere to general health advice, which included physical exercise, dietary modifications, and strategies to prevent falls, as they perceived this advice as non-essential [24,27]. Meanwhile, women in Alami et al. study viewed supplements, including vitamin D and calcium, as “safe” and supposed them to “contain fewer chemicals”, and they stated that “we have always taken it” [24, p.9]. In contrast, they feared anti-resorptive agents, because the products were considered harmful [24].

Need for information

Some postmenopausal women in the included studies reported low provision of information by healthcare professionals [22–24,26,28,29,33]. Jakobsen et al. [22] highlight the health information needs of postmenopausal Danish women with osteoporosis. These women revealed dietary advice and calcium supplements as the most important needs, although most participants had little information regarding osteoporosis management [22]. A few women believed that they had sufficient fundamental knowledge owing to a history of osteoporosis in their families [22]. Despite reading about osteoporosis and Internet research, many women felt uncertain and anxious, rather than being better informed, because they perceived that most of the information focused on osteoporosis as a serious disease involving an increased risk of fractures [22]. These women reported that the health information provided by their physicians was also more applicable to women with osteoporotic fractures. To the extent that this research is exploratory, the findings of this study provide insight into the importance of self-management through information. Arguably, the provision of information to these women is critical for them to manage their long-term health conditions.

A qualitative study in Sweden on postmenopausal women with vertebral fractures reports that they were unsatisfied with the information provided by their healthcare professionals, as they considered it unclear, ambiguous, and contradictory, leading to uncertainty [33]. This finding agrees with the qualitative studies of Lau et al. [28] and Alami et al. [24], who also highlight that healthcare providers provide information in a format that was difficult to understand or fail to provide participants with enough medication information. Even though these women perceived both physicians and pharmacists as knowledgeable and credible, they reported that pharmacists had sufficient time to explain matters in detail or fill any information gaps, whereas physicians had insufficient time to provide information [28]. Postmenopausal Canadian women with osteoporosis emphasised the importance of obtaining information on osteoporosis and developing a treatment plan, stating that physicians should provide sufficient education. They also believed that more public information, such as health campaigns, would help prevent osteoporosis [24].

In general, postmenopausal women with osteoporosis, either with or without vertebral fractures, were dissatisfied with the information provided by their healthcare professionals. These women expected to receive this information from their physicians rather than from their pharmacists.

According to a grounded theory study by Hjalmarson et al. [29], postmenopausal women who participated in an osteoporosis program gained insight into themselves as the program progressed and developed balance and muscle strength through exercise and group discussion. The program also gave the participating women a sense of community and helped them feel that if others coped, so could they [29]. Conversely, women who did not participate in an osteoporosis program missed these benefits and expressed a need to learn about osteoporosis. These women sought health information in other ways, such as through mass media and the Internet [29]. When postmenopausal women who participated understood the possibilities of self-management, they expressed a desire to control their health [29].

Discussion

Several themes emerged from this review: accepting and learning to live with osteoporosis, living with pain, concordance with osteoporosis treatment, and need for information. This review confirms that osteoporosis and fragility fractures have a significant impact on postmenopausal women’s daily lives. Women with osteoporosis living with vertebral fractures describe their pain as severe, and many women with vertebral fractures express low confidence in pain medication’s effectiveness. Some, although not all, women were satisfied with the information provided to them by their healthcare professionals. Women’s belief in the importance of their prescribed treatment plays a significant role in their cooperation in taking the medications prescribed for osteoporosis.

In some of the reviewed studies, participants report that non-acceptance of an osteoporosis diagnosis was a barrier to managing and learning to live with it [24,25]. Disease acceptance is an important factor that directly influences an individual’s mental state and has a long-term effect on osteoporosis treatment [38]. Janiszewska et al. [39] highlight that acceptance of an illness enhances a person’s ability to adapt to their limitations and regain self-esteem and a sense of having control of their life. Non-acceptance of osteoporosis is attributed to inadequate information provision by general practitioners and lack of patient involvement in their treatment plans [24,25]. This situation can be improved by providing simple and easy-to-understand verbal and written health education early in the diagnosis, given both to the patient and their informal support network, including family members and friends [40]. The literature shows that patient involvement in their educational programs is effective in empowering them to take care of their health [41]. The use of visual images helps healthcare providers explain the bone deterioration process in a simple way, which helps these women understand osteoporosis pathology [42]. Billington et al. [43] show that a self-management program is an effective alternative to traditional one-on-one consultations for osteoporosis patients. A consultation program’s primary aim is to facilitate shared decision-making and empower patients to become more autonomous in making treatment decisions [43]. Participation in a consultation program may be a useful strategy for imparting formal osteoporosis education, which in turn would support osteoporosis patients’ long-term disease management free of complications.

Several postmenopausal women with vertebral fractures expressed low confidence in their pain-relief medication they received to minimise their back pain, and they considered the treatment inadequate [32–34]. This finding agrees with those of a systematic review of both qualitative and quantitative studies, which concludes that patients were dissatisfied with their pain medication and that their expectations remained unsatisfied [44]. Patients with back pain were frequently unhappy with their healthcare provider’s treatment approach because their pain was improperly assessed; consequently, they were given inadequate pain relief medication [45]. These patients reported that a lack of communication, lack of respect, and inadequate understanding of their pain by healthcare professionals were the main reasons for their low trust level in pain-relief medication [45,46]. The magnitude of unmet expectations was most evident among the most severely affected patients, and their frustration was exacerbated by lack of involvement in the decision-making process because they were given no opportunity to do so [45,46]. Healthcare providers must communicate with their patients in a manner that considers women’s health literacy, including their educational and cultural background. Such cultural competency and sensitivity may support women’s understanding of pain and help them discuss their pain management preferences.

Non-concordance with osteoporosis therapy was also a recognised problem, with up to 50% of women reported to be non-adherent to therapy [47]. Several studies indicate that non-concordance with medication affects the outcomes of osteoporosis and may result in a greater risk of fractures and hospitalisation [44,48,49]. This review shows that patients’ specific beliefs and values regarding certain medicines and their treatment expectations directly influence their concordance with the treatment plan [24,27,28,31]. Patients with positive beliefs and expectations regarding their medicine and treatment tend to demonstrate high concordance with their treatment, whereas patients with negative beliefs and expectations have low concordance [24,27,28,31,35]. While many social, economic, and healthcare factors may play a role in a patient’s concordance with their treatment plan, patients’ beliefs regarding prescribed medications and treatment appear to play a major role, which is consistent with the findings of previous studies [44,50].

Concordance with scheduled treatment may be improved by providing patient-centred care, which is achieved when healthcare professionals acknowledge each patient as a unique individual with different life experiences and health beliefs [51]. This recognition requires that healthcare professionals be culturally competent [51]. It can be challenging for healthcare professionals to understand the nuances of different cultures; however, they should acknowledge, respect, and adapt to the cultural needs of patients and their families [52]. When healthcare professionals provide culturally sensitive care in accordance with patient values, preferences, and lifestyles, it may improve patient concordance with treatment [31,35,51]. Potential interventions that may improve concordance include the provision of psycho-educational materials about osteoporosis and follow-up to determine the reasons for non-concordance [41].

Raybould et al. [53] underscore the pivotal role played by healthcare professionals in increasing health literacy among patients with osteoporosis, particularly those with fragility fractures. Assessment of these patients’ needs is fundamental to the provision of targeted and culturally sensitive information. This includes, but is not limited to, attention to health literacy level and the importance of anti-resorptive therapy, calcium supplements, vitamin D, exercise, and diet [53]. Schillinger et al. [54] find that patients with inadequate health literacy had greater difficulty communicating with their healthcare providers, particularly in explaining their health problems clearly. Therefore, it is important for health care professionals to assess patients’ health literacy and provide them with information suited to their health literacy status. Targeted osteoporosis information direct influences patient adherence to medical management, including pharmacological therapy [55]. Patients adhering more closely to medical therapy are less likely to develop fragility fractures and have higher levels of self-worth [55]. Healthcare professionals in general, and general practitioners in particular, should provide targeted osteoporosis health information adapted to their patients’ culture and health literacy. This not only makes it acceptable but also more effective [56].

Despite the importance of generic information to aid concordance with osteoporosis treatment, acceptance of diagnosis, supportive pain management, provision of information, and specific care guidelines can assist with implementing the best evidence for practice. Osteoporosis management can be improved by following specific guidelines of the American Association of Clinical Endocrinologists (AACE) (2020), which recommend that healthcare providers communicate the benefits and risks of patient osteoporosis management and involve the patients in the decision-making process [57].

Although most of these studies fulfil all the criteria for the chosen assessment instrument, a few do not fulfil one or three criteria [16]. The studies’ credibility and dependability were further assessed according to the ConQual approach [19] with six of the 17 studies resulting in high-quality rankings and the other 11 moderate-quality rankings. Overall, the quality of the reviewed studies was good.

An important limitation of this review is that our search strategy excluded studies not published in English, and it is possible that research undertaken elsewhere may not have been included for this reason. All studies were conducted with women from North American or European backgrounds, with no data from women from other demographics; consequently, it is difficult to extrapolate the findings to other groups.

Further research focusing on women from different racial, ethnic, and cultural backgrounds is needed to gain a richer understanding of the lived experiences of the disease. The review papers discussed the participants’ experiences with osteoporosis, including those without a history of fragility fractures and those with vertebral fractures. Other than vertebral fractures, the reviewed studies did not explore the lived experiences of women with specific fracture types. Further research focusing on the experiences of women with different types of fragility fractures compared to women with osteoporosis without fragility fractures would contribute to literature in the field of osteoporosis.

In summary, our results suggest that osteoporosis and fragility fractures have a significant impact on postmenopausal women’s life expectancy. Affected women have difficulty carrying out their daily activities owing to pain and have to change their routines to cope with their health problems. Some, although not all, women were satisfied with the information their healthcare professionals provided. Women’s beliefs about the importance of their scheduled treatment play a significant role in their cooperation with the medications prescribed for osteoporosis.

The data in this review highlight potential pathways to improve medication concordance among patients with osteoporosis, including improving trust in healthcare professionals, providing targeted/tailored health information, helping women accept the disease, and respecting the patient’s beliefs. In addition, potential pathways for improving patient satisfaction with pain medication include proper pain assessment, therapeutic communication between the patient and healthcare professionals, respect for the patient’s preferences, and understanding their pain. Finally, potential pathways to improve patient health literacy include assessing the patient’s health literacy level and providing them with targeted, tailored, and patient-centred health information.

Disclosure statement

No potential conflict of interest was reported by the author(s)

Data availability statement

The authors confirm that the data supporting the findings of this study are available within the article [and/or] its supplementary materials.

Additional information

Funding

This work was supported by the Grand Ministry of Higher Education Research and Innovation and the Grand Ministry of Health in Oman. “No external funding.”