Table 4.

Authors reported main findings and extracted information needs

	Authors’ main findings	Expressed needs relating to information	Expressed uncertainties	Other findings regarding information needs
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

^aThe authors used frequent descriptions of ‘ambiguity’ to mean the information could be interpreted in multiple ways thus giving rise to doubt or uncertainty. As this was the authors conjecture, we only extracted information relating to uncertainty where it was clear participants had directly expressed uncertainty