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Archives of Osteoporosis

, 13:21 | Cite as

Experiences of being diagnosed with osteoporosis: a meta-synthesis

  • M. J. RothmannEmail author
  • P. R. Jakobsen
  • C. M. Jensen
  • A. P. Hermann
  • A. C Smith
  • J. Clemensen
Article

Abstract

Summary

This 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.

Introduction

To 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.

Methods

This 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.

Results

Our 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.

Conclusions

This 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.

Keywords

Osteoporosis Systematic review Qualitative research Patient experiences 

Notes

Funding

The review was supported by the Region of Southern Denmark. The funding agency had no direct role in the conduct of the study, data collection, analysis, and interpretation of the data or the preparation, review, and final approval of the manuscript.

Compliance with ethical standards

Conflicts of interest

All authors have completed the authorship and disclosure form. CM Jensen, AC Smith, and J Clemensen have no conflict of interest. PR Jakobsen and MJ Rothmann have received a speaker fee from Eli Lilly. AP Hermann serves on advisory Boards for Eli Lilly, Amgen, and she has received research funding from Eli Lilly, in addition to a speaker fee from Eli Lilly, GSK, Genzyme, Amgen. These disclosed interests are outside the submitted work.

References

  1. 1.
    Vestergaard P, Rejnmark L, Mosekilde L (2005) Osteoporosis is markedly underdiagnosed: a nationwide study from Denmark. Osteoporos Int 16(2):134–141PubMedGoogle Scholar
  2. 2.
    Hernlund E, Svedbom A, Ivergard M, Compston J, Cooper C, Stenmark J et al (2013) Osteoporosis in the European Union: medical management, epidemiology and economic burden. A report prepared in collaboration with the International Osteoporosis Foundation (IOF) and the European Federation of Pharmaceutical Industry Associations (EFPIA). Arch Osteoporos 8:136PubMedPubMedCentralGoogle Scholar
  3. 3.
    Osteoporosis prevention, diagnosis, and therapy. NIH Consens Statement 2000;17(1):1–45Google Scholar
  4. 4.
    Schwarz P, Jorgensen NR, Abrahamsen B (2014) Status of drug development for the prevention and treatment of osteoporosis. Expert Opin Drug Discovery 9(3):245–253Google Scholar
  5. 5.
    Weston JM, Norris EV, Clark EM (2011) The invisible disease: making sense of an osteoporosis diagnosis in older age. Qual Health Res 21(12):1692–1704PubMedPubMedCentralGoogle Scholar
  6. 6.
    Rothmann MJ, Huniche L, Ammentorp J, Barkmann R, Gluer CC, Hermann AP (2014) Women’s perspectives and experiences on screening for osteoporosis (Risk-stratified Osteoporosis Strategy Evaluation, ROSE). Arch Osteoporos 9:192PubMedGoogle Scholar
  7. 7.
    Gerend MA, Erchull MJ, Aiken LS, Maner JK (2006) Reasons and risk: factors underlying women’s perceptions of susceptibility to osteoporosis. Maturitas 55(3):227–237PubMedGoogle Scholar
  8. 8.
    Siris ES, Gehlbach S, Adachi JD, Boonen S, Chapurlat RD, Compston JE, Cooper C, Delmas P, Díez-Pérez A, Hooven FH, LaCroix AZ, Netelenbos JC, Pfeilschifter J, Rossini M, Roux C, Saag KG, Sambrook P, Silverman S, Watts NB, Wyman A, Greenspan SL (2011) Failure to perceive increased risk of fracture in women 55 years and older: the global longitudinal study of osteoporosis in women (GLOW). Osteoporos Int 22(1):27–35PubMedGoogle Scholar
  9. 9.
    Ballard K (2002) Understanding risk: women's perceived risk of menopause-related disease and the value they place on preventive hormone replacement therapy. Fam Pract 19(6):591–595PubMedGoogle Scholar
  10. 10.
    Rothmann MJ, Ammentorp J, Bech M, Gram J, Rasmussen OW, Barkmann R, Glüer CC, Hermann AP (2015) Self-perceived facture risk: factors underlying women’s perception of risk for osteoporotic fractures: the risk-stratified osteoporosis strategy evaluation study (ROSE). Osteoporos Int 26(2):689–697PubMedGoogle Scholar
  11. 11.
    Sale JE, Gignac MA, Frankel L, Hawker G, Beaton D, Elliot-Gibson V et al (2012) Patients reject the concept of fragility fracture—a new understanding based on fracture patients’ communication. Osteoporos Int 23(12):2829–2834PubMedGoogle Scholar
  12. 12.
    Sujic R, Gignac MA, Cockerill R, Beaton DE (2013) Factors predictive of the perceived osteoporosis-fracture link in fragility fracture patients. Maturitas 76(2):179–184PubMedGoogle Scholar
  13. 13.
    Gregson CL, Dennison EM, Compston JE, Adami S, Adachi JD, Anderson FA Jr et al (2014) Disease-specific perception of fracture risk and incident fracture rates: GLOW cohort study. Osteoporos Int 25(1):85–95PubMedGoogle Scholar
  14. 14.
    Giangregorio L, Papaioannou A, Thabane L, DeBeer J, Cranney A, Dolovich L et al (2008) Do patients perceive a link between a fragility fracture and osteoporosis? BMC Musculoskelet Disord 9:38PubMedPubMedCentralGoogle Scholar
  15. 15.
    Giangregorio L, Dolovich L, Cranney A, Adili A, Debeer J, Papaioannou A et al (2009) Osteoporosis risk perceptions among patients who have sustained a fragility fracture. Patient Educ Couns 74(2):213–220PubMedGoogle Scholar
  16. 16.
    Rimes KA, Salkovskis PM (2002) Prediction of psychological reactions to bone density screening for osteoporosis using a cognitive-behavioral model of health anxiety. Behav Res Ther 40(4):359–381PubMedGoogle Scholar
  17. 17.
    Emmett CL, Redmond NM, Peters TJ, Clarke S, Shepstone L, Lenaghan E, Shaw ARG (2012) Acceptability of screening to prevent osteoporotic fractures: a qualitative study with older women. Fam Pract 29(2):235–242PubMedGoogle Scholar
  18. 18.
    Nielsen D, Huniche L, Brixen K, Sahota O, Masud T (2013) Handling knowledge on osteoporosis—a qualitative study. Scand J Caring Sci 27(3):516–524PubMedGoogle Scholar
  19. 19.
    Reventlow S, Bang H (2006) Brittle bones: ageing or threat of disease exploring women’s cultural models of osteoporosis. Scand J Public Health 34(3):320–326PubMedGoogle Scholar
  20. 20.
    Reventlow SD, Hvas L, Malterud K (2006) Making the invisible body visible. Bone scans, osteoporosis and women’s bodily experiences. Soc Sci Med (1982) 62(11):2720–2731Google Scholar
  21. 21.
    Wilkins S (2001) Women with osteoporosis: strategies for managing aging and chronic illness. J Women Aging 13(3):59–77PubMedGoogle Scholar
  22. 22.
    Reventlow SD (2007) Perceived risk of osteoporosis: restricted physical activities? Qualitative interview study with women in their sixties. Scand J Prim Health Care 25(3):160–165PubMedGoogle Scholar
  23. 23.
    Hjalmarson HV, Strandmark M, Klässbo M (2007) Healthy risk awareness motivates fracture prevention behaviour: a grounded theory study of women with osteoporosis. Int J Qual Stud Health Well Being 2(4):236–245Google Scholar
  24. 24.
    Bombak AE, Hanson HM (2016) Qualitative insights from the osteoporosis research: a narrative review of the literature. J Osteoporos 2016:7915041PubMedPubMedCentralGoogle Scholar
  25. 25.
    Barker KL, Toye F, Lowe CJ (2016) A qualitative systematic review of patients’ experience of osteoporosis using meta-ethnography. Arch Osteoporos 11(1):33PubMedPubMedCentralGoogle Scholar
  26. 26.
    Cochrane Handbook of Systematic reviews http://handbook.cochrane.org/chapter_20/20_qualitative_research_and_cochrane_reviews.htm Accessed 1–12-17
  27. 27.
    Torgerson C (2003) Systematic reviews. London: Continuum International Publishing GroupGoogle Scholar
  28. 28.
    Noblit G HR. Meta-ethnography: synthesizing qualitative studies (Qualitative Research Methods) United States of America: Saga Publications, Inc.; 1988Google Scholar
  29. 29.
    Tong A, Flemming K, McInnes E, Oliver S, Craig J (2012) Enhancing transparency in reporting the synthesis of qualitative research: ENTREQ. BMC Med Res Methodol 12:181PubMedPubMedCentralGoogle Scholar
  30. 30.
    Joanna Briggs Institute Reviewers’ Manual. https://joannabriggs.org/assets/docs/sumari/ReviewersManual-2014.pdf Accessed 1-12-17
  31. 31.
    World Health O, Risk WHOSGoAoF, its Application to Screening for Postmenopausal Osteoporosis Assessment of Fracture R, its Application to Screening for Postmenopausal O. Assessment of fracture risk and its application to screening for postmenopausal osteoporosis: report of a WHO Study Group. WHO technical report series. 1994:129 sGoogle Scholar
  32. 32.
    Kanis JA, Melton LJ 3rd, Christiansen C, Johnston CC, Khaltaev N (1994) The diagnosis of osteoporosis. J Bone Miner Res 9(8):1137–1141PubMedGoogle Scholar
  33. 33.
    Kristiansen KM BN, Tingleff EB, Rossen CB (2008) Litteratursøgning i praksi: begreber, strategier og modeller. Sygeplejersken 108(10)Google Scholar
  34. 34.
    Frandsen TF, Dyrvig AK, Christensen JB, Fasterholdt I, Oelholm AM (2014) A guide to obtain validity and reproducibility in systematic reviews. Ugeskr Laeger 176(7)Google Scholar
  35. 35.
    Moher D, Liberati A, Tetzlaff J, Altman DG (2009) Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. J Clin Epidemiol 62(10):1006–1012PubMedGoogle Scholar
  36. 36.
    Hallberg I, Ek AC, Toss G, Bachrach-Lindstrom M (2010) A striving for independence: a qualitative study of women living with vertebral fracture. BMC Nurs 9:7PubMedPubMedCentralGoogle Scholar
  37. 37.
    Hansen C, Konradsen H, Abrahamsen B, Pedersen BD (2014) Women’s experiences of their osteoporosis diagnosis at the time of diagnosis and 6 months later: a phenomenological hermeneutic study. Int J Qual Stud Health Well Being 9:22438PubMedGoogle Scholar
  38. 38.
    Nielsen DS, Brixen K, Huniche L (2011) Men’s experiences of living with osteoporosis: focus group interviews. Am J Mens Health 5(2):166–176PubMedGoogle Scholar
  39. 39.
    Sale JE, Ashe MC, Beaton D, Bogoch E, Frankel L (2016) Men’s health-seeking behaviours regarding bone health after a fragility fracture: a secondary analysis of qualitative data. Osteoporos Int 27(10):3113–3119PubMedGoogle Scholar
  40. 40.
    Sale JE, Gignac MA, Hawker G, Beaton D, Bogoch E, Webster F et al (2014) Non-pharmacological strategies used by patients at high risk for future fracture to manage fracture risk—a qualitative study. Osteoporos Int 25(1):281–288PubMedGoogle Scholar
  41. 41.
    Sale JE, Cameron C, Hawker G, Jaglal S, Funnell L, Jain R et al (2014) Strategies used by an osteoporosis patient group to navigate for bone health care after a fracture. Arch Orthop Trauma Surg 134(2):229–235PubMedGoogle Scholar
  42. 42.
    Solimeo SL, Weber TJ, Gold DT (2011) Older men’s explanatory model for osteoporosis. The Gerontologist 51(4):530–539PubMedPubMedCentralGoogle Scholar
  43. 43.
  44. 44.
    Kanis JA, Johnell O (1999) The burden of osteoporosis. J Endocrinol Investig 22(8):583–588Google Scholar
  45. 45.
    Reventlow SD (2008) Risikoopfattelse og osteoporose hos kvinder i alderen 60–70 år: en kvalitativ undersøgelse af risikooplevelse, kulturelle forestillinger, kropslige opfattelser og kropspraksis. University of CopenhagenGoogle Scholar
  46. 46.
    Sale JE, Gignac MA, Hawker G, Beaton D, Frankel L, Bogoch E et al (2016) Patients do not have a consistent understanding of high risk for future fracture: a qualitative study of patients from a post-fracture secondary prevention program. Osteoporos Int 27(1):65–73PubMedGoogle Scholar
  47. 47.
    Noble H, Smith J (2015) Issues of validity and reliability in qualitative research. Evid Based Nurs 18(2):34–35PubMedGoogle Scholar
  48. 48.
    Unnanuntana A, Gladnick BP, Donnelly E, Lane JM (2010) The assessment of fracture risk. J Bone Joint Surg Am 92(3):743–753PubMedPubMedCentralGoogle Scholar

Copyright information

© International Osteoporosis Foundation and National Osteoporosis Foundation 2018

Authors and Affiliations

  • M. J. Rothmann
    • 1
    • 2
    • 3
    • 4
    Email author
  • P. R. Jakobsen
    • 1
    • 3
    • 4
  • C. M. Jensen
    • 3
    • 4
    • 5
  • A. P. Hermann
    • 1
    • 3
  • A. C Smith
    • 4
    • 6
  • J. Clemensen
    • 3
    • 4
  1. 1.Department of EndocrinologyOdense University HospitalOdense CDenmark
  2. 2.Department of RheumatologyOdense University HospitalOdenseDenmark
  3. 3.Department of Clinical ResearchUniversity of Southern DenmarkOdenseDenmark
  4. 4.Centre for Innovative Medical TechnologyUniversity of Southern Denmark & Odense University HospitalOdenseDenmark
  5. 5.Department of Orthopaedic Surgery and TraumatologyOdense University HospitalOdenseDenmark
  6. 6.Centre for Online HealthUniversity of QueenslandBrisbaneAustralia

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