Introduction
Methods
Inclusion criteria | Exclusion criteria |
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- Studies reporting patient expressed information needs or uncertainties - Over half included participants have either osteoporosis and/or a fragility fracture - Participants are adults - Studies are qualitative | - Studies not in English language and for which translations could not be obtained. - Conference abstracts, letters, studies with no empirical results or no full text available. - Information needs of health professionals, carers or family members rather than participants OR those at risk of osteoporosis. - Participants with fractures which are unlikely to be fragility fractures (e.g. major trauma, age majority participants < 50 years). - Articles describing the evaluation of interventions aimed at improving information support without explicit assessment of participant perceived information needs. - Articles describing assessment of participant knowledge without explicit assessment of participant perceived information needs. |
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Expressed information needs, i.e. where patient participant(s) was/were described as wanting to know more
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Expressions of uncertainty, i.e. where patient participant(s) was/were described as being confused or unsure
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Findings describing examples where information was given and was helpful
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Inferred information needs (i.e. where authors deduce a need based on tested or assumed knowledge rather than patients expressing a need directly)
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Anything else of relevance to giving and receiving of information
Results
Summary of included studies
First author (year), reference | Aim | Method | Sample | Recruitment setting | Country of origin |
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Besser (2012), [15] | To explore how patients with osteoporosis perceive their illness and treatment in order to investigate adherence and how to improve it. | Semi-structured interviews | n = 14 10 with osteoporosis, 4 with osteopenia. All female, mean age 69. | Secondary care—osteoporosis screening unit and rheumatology clinic. | UK |
French (2005), [16] | To identify barriers to following calcium recommendations in women with a reduced bone mineral density. | Focus groups | n = 30 13 diagnosed osteopenia, 17 diagnosed osteoporosis. All female, age 52–87 years. | Previous osteoporosis treatment programme at a tertiary referral centre. Participants previously had a consultation with a dietician. | Canada |
Hansen (2014), [17] | To investigate women’s experiences of living with osteoporosis during the first 6 months after diagnosis when treatment was first prescribed. | Semi-structured interviews | n = 15 All with recently diagnosed osteoporosis. All female, age 65–79 years. | Secondary care, following recently attending a DXA scan, at 1 of 2 hospitals. | Denmark |
Iversen (2011), [18] | To determine factors influencing adherence to osteoporosis medications among older adults. | Focus groups | n = 32 All diagnosed osteoporosis. 30 female, 2 male, age 65–85 years. | Advertisements in a tertiary hospital medical centre newsletter. | USA |
Lau (2008), [19] | To explore the experiences and perceptions of postmenopausal women regarding strategies to improve adherence to osteoporosis therapy. | Focus groups | n = 37 All with diagnosed osteoporosis and either 1 prescription medication or over the counter medication for osteoporosis. All female, age 48–88 years. | By 3 family physicians, 1 geriatrician, 1 rheumatologist, and 3 community pharmacists. | Canada |
Mazor (2010), [20] | To explore older women’s views about prescription osteoporosis medication use and identify factors that influence these views. | Telephone interview | n = 30 All diagnosed osteoporosis. All female, mean age 73.4 years. | Primary care. | USA |
McKenna (2008), [21] | To compare experience of osteoporosis in Caucasian and South Asian women during consultations. | Semi-structured interviews | n = 21 All with osteoporosis, 19 with history of fragility fractures. All female, age 43–82 years. | Support groups, osteoporosis exercise classes, South Asian community centres. | USA |
McMillan (2014), [22] | To explore post discharge concerns of older people after a fall-induced hip fracture. | Semi-structured interviews | n = 19 All with previous hip fracture. 15 women, 4 men. Age 67–89 years (mean 79). | Secondary care following recent discharge from hospital following hip fracture. | UK |
Meadows (2005), [23] | To explore women’s post fracture experiences to understand how general practitioners could tailor patient education about risk. | Semi-structured interviews | n = 22 All with previous fragility fracture. All women, over 40 years of age. | Orthopaedic trauma surgery database. | Canada |
Nielsen (2011), [24] | To understand how men experience having osteoporosis and handle osteoporosis in their everyday lives. | Focus groups | n = 16 All with osteoporosis. All male, age 51–82 years. | Attendees at endocrinology clinic. | Denmark |
Nielsen (2010), [25] | To understand the importance of information and knowledge about osteoporosis for participants’ way of handling osteoporosis in their everyday lives. | Semi-structured interviews | n = 26 All with osteoporosis. 20 women, 6 men, age 50–84 years. 14 from UK, 12 from Denmark. | By healthcare professionals in a secondary healthcare environment. | UK, Denmark |
Sale (2010), [26] | To examine fracture participant understanding of osteoporosis and osteoporosis care after being screened for, and educated about osteoporosis, in a fracture clinic. | Focus groups | n = 24 All with a previous fragility fracture. 18 women, 6 men, age 47–80 years. | Urban osteoporosis screening fracture clinic. | Canada |
Salter (2014), [27] | To describe key perceptions that influence older women’s adherence and persistence with prescribed medication when identified to be at a higher than average risk of fracture. | Semi-structured interview | n = 30 Above average risk of subsequent fracture and recently started preventative osteoporosis medication. All women, age 73–85 years. | Participants of a previous primary care-based randomised controlled trial (SCOOP). | UK |
Schiller (2015), [28] | To understand the recovery phase after hip fracture from the patient perspective, and identify specific messages that could be integrated into future educational material for clinical practice to support patients during recovery | Semi-structured interview | n = 19 11 with previous hip fracture (10 women, 1 man), 8 family members or other caregivers. | Newspaper advertisement, emails, previous study participants, community organisations with a history of collaboration, hospital research buildings and websites. | Canada |
Solimeo (2011), [29] | To explore the experiences of male osteoporosis patients | Semi-structured interview | n = 23 13 with previous fragility fracture, 17 on osteoporosis medication. All men, age 53–86 years. | By physician in secondary care. | USA |
Svensson (2016), [30] | To understand the lived experience of women with an osteoporotic vertebral compression fracture | Semi-structured interview | n = 10 All with vertebral fracture. All women, aged > 65 years. | Secondary care in an outpatient clinic. | Sweden |
Summary of findings relating to quality appraisal
First author (year) | Abstract, title | Introduction, aims | Method, data | Sampling | Data analysis | Ethics, bias | Results | Transferability | Implications | Comments |
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Besser (2012) [15] | 4 | 4 | 4 | 3 | 3 | 3 | 4 | 3 | 3 | Single centre. Purposive sampling. Analysis conducted by > 1 author. |
French (2005) [16] | 3 | 3 | 4 | 2 | 3 | 3 | 4 | 2 | 4 | Sampling from 1 centre where patients saw a dietician. |
Hansen (2014) [17] | 3 | 4 | 4 | 3 | 4 | 4 | 4 | 3 | 3 | Recruitment from 2 sites. Analysis described in depth and conducted by > 1 author. Topic guide not presented, little discussion of limitations beyond author’s role. |
Iversen (2011) [18] | 4 | 4 | 4 | 3 | 3 | 2 | 4 | 3 | 3 | Implied consent. |
Lau (2008) [19] | 3 | 4 | 3 | 3 | 4 | 4 | 4 | 3 | 3 | Single centre. Purposive sampling. Author demonstrates reflexivity. Minimal description of coding. |
Mazor (2010) [20] | 4 | 4 | 4 | 4 | 4 | 3 | 3 | 3 | 3 | Single centre study. Purposive sample. Analysis and topic guide clearly described |
McKenna (2008) [21] | 3 | 4 | 3 | 3 | 3 | 3 | 4 | 3 | 3 | Multiple recruitment strategies from one area. Analysis conducted by > 1 author. No discussion of limitations |
McMillan (2014) [22] | 4 | 4 | 4 | 3 | 4 | 3 | 3 | 3 | 4 | Purposive sampling. Recruited from 3 sites |
Meadows (2005) [23] | 4 | 2 | 3 | 2 | 3 | 3 | 3 | 2 | 3 | Aim not clearly stated. Convenience sample. |
Nielsen (2011) [24] | 3 | 4 | 4 | 3 | 4 | 4 | 3 | 3 | 4 | Men recruited from single site. Analysis described in depth. Author demonstrates reflexivity. |
Nielsen (2010) [25] | 3 | 4 | 4 | 3 | 3 | 3 | 4 | 3 | 3 | Multi-site study. Analysis and topic guide described in depth. Author demonstrates reflexivity |
Sale (2010) [26] | 4 | 4 | 4 | 3 | 3 | 4 | 3 | 2 | 3 | Participants from a standardised programme in 1 fracture clinic. |
Salter (2014) [27] | 4 | 3 | 4 | 4 | 3 | 3 | 4 | 4 | 4 | Longitudinal qualitative study embedded within a multi-centre trial. Purposive sample. 2 interviews per participant. Topic guide and analysis clearly described |
Schiller (2015) [28] | 3 | 4 | 3 | 4 | 3 | 3 | 4 | 3 | 2 | No clear message for practice or further research |
Solimeo (2011) [29] | 3 | 2 | 3 | 3 | 3 | 3 | 3 | 3 | 2 | Lacking implications beyond need for gender-sensitive treatment protocols |
Svensson (2016) [30] | 4 | 4 | 4 | 3 | 4 | 3 | 2 | 3 | 3 | No quotes to support findings. No attention to deviant cases. |
Main findings
Authors’ main findings | Expressed needs relating to information | Expressed uncertainties | Other findings regarding information needs | |
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Besser (2012) [15] | Patients are unaware that medications reduce fracture risk. Drawings can be used to help patients understand the condition. Some have limited knowledge about causes. Uncertainty about whether osteoporosis can be controlled with medication. Patients who do not attend clinics are particularly at risk of non-adherence. | Feedback on DXA scans. Information about medications (directions, indications, long-term effects). More information about osteoporosis generally. | Cause of their osteoporosis. Role of medication in treating osteoporosis. Seriousness of their condition. Role of diet and self-management in treating osteoporosis. Medication instructions | Current information not perceived as understandable. Perceived negative relationships with their doctor and perceived lack of clinician knowledge were associated with information needs being unmet. Information sought from elsewhere, e.g. family. Use of diagrams to aid explanation during consultations considered helpful. Feedback on DXA scan facilitated compliance. |
French (2005) [16] | Health concerns, lifestyle, food preferences and side effects need to be considered in individualised assessments. | The best foods to eat. The best supplements to take. | Inconsistent dietary advice. Not all information sought from health professionals. | |
Hansen (2014) [17] | Women accept the diagnosis of osteoporosis in different ways, influenced by positive or negative experiences of the diagnosis process. Need for improved support for women to gain understanding of their diagnosis, fracture risk and learning to live with osteoporosis. | Harm of medication. | Whether they had weighed up information appropriately to make decision about treatment. | Having information needs met contributed to a feeling of being taken seriously. One participant tried to give her GP information but it was rejected. Uncertainties associated with a cycle of worry and fear, exacerbated by not getting information from GP. |
Iversen (2011) [18] | Patients report lack of knowledge, dissatisfaction with doctor visits, side effects and difficulty complying with or remembering medication instructions as barriers to adherence. | Purpose of medication. How to take medication. | Not enough time in consultations to raise medication issues. Wanted and valued written information. Participant reported primary care physicians needed more knowledge about medications (compared to specialist). | |
Lau (2008) [19] | Strategies that facilitate adherence to bisphosphonates include having a system to take medication, using cues, being well informed about the reasons for medication and having regular follow-up for support and monitoring. | More information on expected effects of medications and instructions on how to take. Follow up after medication. Suggestions for managing medications more easily. Understandable and written information about medication. | Conflicting messages about medication were given by different healthcare providers. | Participants take in a small proportion of the information given by a specialist. Pharmacists perceived to have more time than physicians to give medicine information. Physicians overly focus on medication. Active in seeking information on medications, from a variety of sources. |
Mazor (2010) [20] | Women need clear information about their condition including the diagnosis implications, treatment options and side effects. | Unanswered questions relating to reasons for procedures for taking bisphosphonates and the ‘pros’ of treatment. | Need for drugs if already following lifestyle measures. Need for medication and whether it was safe and effective. | Did not always voice concerns with physician. Difficulty forming questions to ask physician described, and a feeling the doctor would not have time to answer questions. Doctors ‘too quick’ to recommend medication. |
McKenna (2008) [21] | In general, patients differed in their views by age more than by ethnicity. South Asian and older participants expressed preferences for receiving information from their GP. Physical activity was inconsistently recommended by their physician. | More information regarding self-management from their doctors including recommendations for exercise. | The role and interpretation of a DXA scan. | Preference for more information through ongoing discussion in sequences of consultations. Lack of confidence to ask questions. Lack of confidence in GPs’ understanding. Inappropriate focus on medication rather than self-management in consultations. Younger participants expressed information needs more than older participants. Ethnicity associated with consultation behaviour, sources of information accessed and readiness to accept information from third parties, e.g. NOS. Participant described how her GP had become more interested in osteoporosis and learned from her, over time. |
McMillan (2014) [22] | Participants require information to ‘balance risk’ of physical activity against risk of fracture. | Feedback on their progress after hip fracture. | Valued explanation by physiotherapists about which exercises to do, the purpose of exercises. Missed opportunities to receive information in hospital due to various contextual factors. Repeated consultations with written and verbal information enhanced understanding. Involving relatives in providing information was important. | |
Meadows (2005) [23] | Attitudes of women with prior low trauma fractures in mid-life toward further fracture risk fell into 3 groups: laissez faire (prefer to wait and see); those who thought they should be doing more, those who were proactive in seeking information and addressing risk. | Supplement use after fracture had healed. | Expressed uncertainties did not lead to taking physician’s advice. Sought information from a variety of sources. Some gain information ‘passively’. | |
Nielsen (2011) [24] | Maintaining physical activity and maintaining a masculine identity was important to participants. Osteoporosis was seen as a female condition and therefore patient information was perceived as not relevant. | Support groups. Opportunities to talk to other male osteoporosis patients. | Majority did not express information needs. Not asking questions or seeking care due to fear of the future or fear of consequences for employment. Decision to seek care often driven by female partners. Osteoporosis was seen as a female condition; shame and embarrassment. | |
Nielsen (2010) [25] | Previous life conditions influenced the way osteoporosis was handled. Some patients dealt well with the risk of fracture and pain whilst others were more fearful and limited. Patient information and a good relationship with health professionals were highly valued. | More readily available contact with healthcare professionals. Opportunities to learn from other patient experiences. | Role of medication. Relationship between osteoporosis and normal ageing bone. Prognosis and outlook. Safety of carrying out activities of daily living. | Variation in the amount of information wanted. Some expressed no information needs or that information could be detrimental, e.g. becoming depressed after meeting someone with severe osteoporosis. |
Sale (2010) [30] | Despite participants having partaken in a standardised screening programme, in which education was thought to be implicit, ‘ambiguity’a around diagnosis, testing and treatment were described. | Self-management options available alongside medication (dietary sources of calcium/vitamin D). Purpose of bone density scans, why only some body regions are scanned. | Relationship of pain to osteoporosis. Role of supplements, optimum doses. Purpose of medication. | Some participants described discontinuing medication when they ‘felt better’. |
Salter (2014) [23] | Adherence to preventive medication for osteoporosis is complex and multifaceted. Individual understanding, choice, risk and perceived need interact; unpredictable patterns of usage and acceptability. Professionals should not assume adherence. | More regular reviews to see if medication was still necessary, and if medication was working. | Whether medication was working. Nature, importance of fracture risk Relationship between falls and fractures; some think medication would reduce falls, or high fracture risk means being a faller. | Some perceived their fracture risk was normal for age and therefore questioned the need to take medication. Long-term change of osteoporotic bones was a lower priority than other illnesses, for participants and their doctors. |
Schiller (2015) [25] | Participants discussed 3 methods that enabled recovery: seek support, move more, preserve perspective. | Community resources available to help post-diagnosis. Information focusing on the timeline of their prognosis—a ‘recovery map’ or checklist suggested. Valued information about mobilisation, exercise programmes. | Recognition that asking questions of health professionals can be challenging for some individuals. A patient advocate was suggested as a possible solution by a relative. | |
Solimeo (2011) [27] | Men feel protected from osteoporosis (‘a female condition’) which can delay diagnosis. Perceived lack of treatment options for men. Limited activities after diagnosis impact on masculine identities. | Medication that is suitable for men (expressed as an unknown, rather than an information need). | Difficulty getting a diagnosis and having to ‘persuade’ their doctor for tests. Need for more ‘marketing’ about osteoporosis affecting men was expressed. | |
Svensson (2016) [28] | Most prominent experiences of participants with vertebral fracture were fear and concern. 5 themes identified: struggling to understand a deceiving body, breakthrough pain fuelling fear, fearing a trajectory into isolation, concerns of dependency, fearing an uncertain future. | Information on managing vertebral fractures, pain relief and advice to rest. Support to live independently without fear | Uncertain future which contributed to fear | Not taken seriously by healthcare professionals, felt isolated. Felt health professionals thought they ought to accept the changes to their body as ‘normal ageing’. Healthcare professionals were described as uninterested and indifferent to their condition, viewed as low priority. Difficulty getting vertebral fracture diagnosis; participants repeatedly requesting x-rays or referral |