Skip to main content

Advertisement

SpringerLink
Log in

Evidence of patient beliefs, values, and preferences is not provided in osteoporosis clinical practice guidelines

  • Review Article
  • Published:
Osteoporosis International Aims and scope Submit manuscript

Abstract

Summary

We examined how patient beliefs, values, and preferences (BVPs) were included and conceptualized in international osteoporosis guidelines. The majority of guidelines did not mention BVPs. When mentioned, BVPs were conceptualized as preference for one medication over another. A broader conceptualization and inclusion of BVPs should be incorporated in osteoporosis guidelines.

Introduction

Our objectives were to determine (1) the extent to which osteoporosis guidelines reflected patients’ beliefs, values, and preferences (BVPs); (2) how BVPs were conceptualized; and (3) the methods used to elicit BVPs in the references cited by the guidelines.

Methods

We conducted a document analysis of English-language international osteoporosis guidelines based on the International Osteoporosis Foundation website. We examined each guideline and extracted all instances of statements pertaining to BVPs. The statements were reviewed by two independent researchers. Discrepancies in data extraction were resolved by the first author. We developed categories based on five common elements that represented the BVP statements.

Results

Twenty-seven of 70 (39%) guidelines included 95 statements about patient BVPs. Of the 95 statements, 32 statements (14 guidelines) were classified under BVP related to the choice of pharmacotherapy or general treatment, 10 (7 guidelines) under BVP related to adherence to pharmacotherapy or treatment in general, 5 (5 guidelines) under BVP related to financial costs and benefits, 43 (19 guidelines) under other BVP mentioned but not supported by a reference to a primary study or systematic review, and 5 (3 guidelines) under other BVP mentioned and supported by at least one reference to a primary study or systematic review. Twenty-nine references were cited to reflect the BVPs mentioned, including an editorial and quantitative studies.

Conclusions

Twenty-seven (39%) of the guidelines included mention of patients’ BVPs. In 19 guidelines, the importance of BVPs was mentioned but these statements were not supported by references to a primary study or systematic review. BVPs were most often (14 guidelines) conceptualized as preference for one medication over another. We suggest that qualitative data be included as evidence of BVPs in guidelines.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1

Similar content being viewed by others

References

  1. McCormack JP, Loewen P (2007) Adding “value” to clinical practice guidelines. Can Fam Physician 53:1326–1327

    PubMed  PubMed Central  Google Scholar 

  2. Sackett DL, Rosenberg WMC, Gray JAM, Haynes RB, Richardson WS (1996) Evidence based medicine: what is is and what it isn’t: it’s about integrating individual clinical expertise and the best external evidence. BMJ 312(7023):71–72

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  3. Excellence NIfHaC (2014) Developing NICE guidelines: the manual, pp 1–234

    Google Scholar 

  4. Gill G (2001) Going Dutch? How to make clinical guidelines work: an innovative report from Holland. Clin Med 1(4):307–308

    Article  CAS  Google Scholar 

  5. James PA, Cowan TM, Graham RP (1998) Patient-centered clinical decisions and their impact on physician adherence to clinical guidelines. J Fam Pract 46(4):311–318

    CAS  PubMed  Google Scholar 

  6. Charles C, Gafni A, Whelan T (1997) Shared decision-making in the medical encounter: what does it mean? (or it takes at least two to tango). Soc Sci Med 44(5):681–692

    Article  CAS  PubMed  Google Scholar 

  7. Guyatt GH, Haynes RB, Jaeschke RZ et al (2000) Users’ guide to the medical literature: XXV. Evidence-based medicine: principles for applying the users’ guides to patient care. JAMA 284(10):1290–1296

    Article  CAS  PubMed  Google Scholar 

  8. Montori VM, Devereaux PJ, Straus S, Haynes B, Guyatt G (2008) Decision making and the patient. In: Guyatt G, Rennie D, Meade MO, Cook DJ (eds.) Users’ guides to the medical literature: a manual for evidence-based clinical practice. 2nd ed. 22:643–661. New York: The MacGraw-Hill Companies, Inc.

  9. Group PCR (2008) Patients’ preferences within randomised trials: systematic review and patient level meta-analysis. BMJ 337:a1864

    Article  Google Scholar 

  10. Purnell TS, Joy S, Little E, Bridges JF, Maruthur N (2014) Patient preferences for noninsulin diabetes medications: a systematic review. Diabetes Care 37(7):2055–2062

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  11. Joy S, Purnell T, Little E, Bridges J (2013) Patient preferences for the treatment of type-2 diabetes: a scoping review. PharmacoEconomics 31:877–892

    Article  PubMed  Google Scholar 

  12. Utens CMA, Dirksen CD, Weijden TV, Joore MA (2016) How to integrate research evidence on patient preferences in pharmaceutical coverage decisions and clinical practice guidelines: a qualitative study among Dutch stakeholders. Health Policy 120(1):120–128

    Article  PubMed  Google Scholar 

  13. Breejen EM, Hermens RP, Galama WH, Willemsen WN, Kremer JA, Nelen WL (2016) Added value of involving patients in the first step of multidisciplinary guideline development: a qualitative interview study among infertile patients. Int J Qual Health Care 28(3):299–305

    Article  Google Scholar 

  14. Tong A, Tunnicliffe DJ, Lopez-Vargas P et al (2016) Identifying and integrating consumer perspectives in clinical practice guidelines on autosomal-dominant polycystic kidney disease. Nephrology 21(2):122–132

    Article  PubMed  Google Scholar 

  15. Kanis JA, Harvey NC, Cooper C et al (2016) A systematic review of intervention thresholds based on FRAX: a report prepared for the National Osteoporosis Guideline Group and the International Osteoporosis Foundation. Arch Osteoporos 11(1):25. https://doi.org/10.1007/s11657-016-0278-z

  16. Wang X, Chen Y, Yao L et al (2018) Reporting of declarations and conflicts of interest in WHO guidelines can be further improved. J Clin Epidemiol 98:1–8

    Article  CAS  PubMed  Google Scholar 

  17. Ospina NS, Rodriguez-Gutierrez R, Brito JP, Young WF, Montori VM (2015) Is the endocrine research pipeline broken? A systematic evluation of the Endocrine Society clinical practice guidelines and trial registration. BMC Med 13:187

    Article  Google Scholar 

  18. O'Leary Z (2004) The essential guide to doing research. Sage Publications, London

    Google Scholar 

  19. Guyatt G, Rennie D, Meade MO, Cook DJ (2008) User’s guide to the medical literature: a manual for evidence-based clinical practice, 2nd edn. McGraw Hill, New York

    Google Scholar 

  20. Scottish Intercollegiate Guidelines Network (SIGN 142) Management of osteoporosis and the prevention of fragility fractures. Healthcare Improvement Scotland. 1–128. http://www.sign.ac.uk/pdf/SIGN142.pdf

  21. National Institute for Health and Clinical Excellence (2010) Denosumab for the prevention of osteoporotic fractures in postmenopausal women. Technology appraisal 1–60. http://guidance.nice.org.uk/TA204

  22. The Royal Australian College of General Practitioners (2010) Clinical guideline for the prevention and treatment of osteoporosis in postmenopausal women and older men. 1–83

  23. Ip TP, Cheung SK, Cheung TC et al (2013) The Osteoporosis Society of Hong Kong (OSHK): 2013 OSHK guideline for clinical management of postmenopausal osteoporosis in Hong Kong. Hong Kong Med J 19(Suppl 2):1–40

    PubMed  Google Scholar 

  24. Chakhtoura M, Leslie WD, McClung M, Cheung AM, Fuleihan GE (2017) The FRAX-based Lebanese osteoporosis treatment guidelines: rationale for a hybrid model. Osteoporos Int 28(1):127–137. https://doi.org/10.1007/s00198-016-3766-5

    Article  CAS  PubMed  Google Scholar 

  25. Hough S, Ascott-Evans B, Brown S et al (2010) NOFSA guideline for the diagnosis and management of osteoporosis. J Endocrinol Metab Diabetes S Afr 15(3):1–188

    Google Scholar 

  26. Body JJ, Bergmann P, Boonen S et al (2010) Evidence-based guidelines for the pharmacological treatment of postmenopausal osteoporosis: a consensus document by the Belgian Bone Club. Osteoporos Int 21(10):1657–1680. https://doi.org/10.1007/s00198-010-1223-4

    Article  PubMed  PubMed Central  Google Scholar 

  27. Papaioannou A, Morin S, Cheung AM, et al. (2010) Clinical practice guidelines for the diagnosis and management of osteoporosis in Canada: Background and technical report. Toronto, 1–89

  28. Cosman F, de Beur SJ, LeBoff MS et al (2014) Clinician’s guide to prevention and treatment of osteoporosis. Osteoporos Int 25(10):2359–2381. https://doi.org/10.1007/s00198-014-2794-2

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  29. Camacho PM, Petak SM, Binkley N et al (2016) American Association of clinical endocrinologists and American college of endocrinology clinical practice guidelines for the diagnosis and treatment of postmenopausal osteoporosis - 2016. Endocr Pract 22(Suppl 4):1–42. https://doi.org/10.4158/ep161435.gl

    Article  PubMed  Google Scholar 

  30. Nordin C (2011) Screening for osteoporosis: U.S. Preventive Services Task Force recommendation statement. Ann Intern Med 155(4):356–364. https://doi.org/10.7326/0003-4819-155-4-201108160-00021

  31. (SIBOMM) ISoOaMM (2009) IBEROAMERICAN CONSENSUS ON OSTEOPOROSIS SIBOMM 2009: Osteoporosis: prevention, diagnosis, and treatment.1–49

  32. Kanis JA, McCloskey EV, Johansson H et al (2013) European guidance for the diagnosis and management of osteoporosis in postmenopausal women. Osteoporos Int 24(1):23–57

    Article  CAS  PubMed  Google Scholar 

  33. Body JJ, Bergmann P, Boonen S et al (2012) Extraskeletal benefits and risks of calcium, vitamin D and anti-osteoporosis medications. Osteoporos Int 23(Suppl 1):S1–S23. https://doi.org/10.1007/s00198-011-1891-8

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  34. Body JJ, Bergmann P, Boonen S et al (2007) Management of cancer treatment-induced bone loss in early breast and prostate cancer -- a consensus paper of the Belgian Bone Club. Osteoporos Int 18(11):1439–1450. https://doi.org/10.1007/s00198-007-0439-4

    Article  CAS  PubMed  Google Scholar 

  35. Osteologie D (2011) DVO guideline 2009 for prevention, diagnosis and therapy of osteoporosis in adults. Osteologie 20:55–74

    Article  Google Scholar 

  36. Makras P, Vaiopoulos G, Lyritis GP (2012) 2011 guidelines for the diagnosis and treatment of osteoporosis in Greece. J Musculoskelet Neuronal Interact 12(1):38–42

    CAS  PubMed  Google Scholar 

  37. Rossini M, Adami S, Bertoldo F et al (2016) Guidelines for the diagnosis, prevention and management of osteoporosis 2016. Reumatismo 68(1):1–39

    Article  CAS  PubMed  Google Scholar 

  38. Network SIG (2009) Management of hip fracture in older people. 1–56

  39. González-Macías J, del Pino-Montes J, Olmos J, Nogués X (2015) Clinical practice guidelines for postmenopausal, glucocorticoid-induced and male osteoporosis. Rev Clin Esp 215(9):515–526

    Article  PubMed  Google Scholar 

  40. Excellence NIfHaC (2008) Alendronate, etidronate, risedronate, raloxifene, strontium ranelate and teriparatide for the secondary prevention of osteoporotic fragility fractures in postmenopausal women: technology appraisal guidance. United Kingdom. 1–87

  41. Excellence NIfHaC (2008) Alendronate, etidronate, risedronate, raloxifene and strontium ranelate for the primary prevention of osteoporotic fragility fractures in postmenopausal women. 1–82

  42. Meeta DL, Agarwal N, Vaze N, Shah R, Malik S (2013) Clinical practice guidelines on menopause: an executive summary and recommendations. J Mid-life Health 4(2):77–106

    Article  CAS  Google Scholar 

  43. Meeta S, Harinarayan CV, Marwah R, Sahay R, Kalra S, Babhulkar S (2013) Clinical practice guidelines on postmenopausal osteoporosis: an executive summary and recommendations. J Mid-life Health 4(2):107FNx01 Copyright 2013 Medknow Publications and Media Pvt. Ltd. (HTML document version posted as of May 10, 2018)

    Google Scholar 

  44. Ministry of Health S. Osteoporosis (2008) MOH Clinical Practice guidelines. 1–94

  45. Maalouf G, Gannage-Yared MH, Ezzedine J et al (2007) Middle East and North Africa consensus on osteoporosis. J Musculoskelet Neuronal Interact 7(2):131–143

    CAS  PubMed  Google Scholar 

  46. Maalouf G, Bachour F, Issa M, Yazbeck P, Maalouf N, Daher C, Yaghi Y, Eid R (2012) Guidelines for fragility fractures in Lebanon. J Med Liban 60(3):153–158

    PubMed  Google Scholar 

  47. Kendler DL, Bessette L, Hill CD et al (2010) Preference and satisfaction with a 6-month subcutaneous injection versus a weekly tablet for treatment of low bone mass. Osteoporos Int 21:837–846

    Article  CAS  PubMed  Google Scholar 

  48. Cranney AB, Coyle D, Hopman WM, Hum V, Power B, Tugwell PS (2005) Prospective evaluation of preferences and quality of life in women with hip fractures. J Rheumatol 32:2393–2399

    PubMed  Google Scholar 

  49. Freemantle N, Satram-Hoang S, Tang E-T et al (2012) Final results of the DAPS (Denosumab Adherence Preference Satisfaction) study: a 24-month, randomized, crossover comparison with alendronate in postmenopausal women. Osteoporos Int 23:317–326

    Article  CAS  PubMed  Google Scholar 

  50. Selva A, Sanabria AJ, Pequeno S et al (2017) Incorporating patients’ views in guideline development: a systematic review of guidance documents. J Clin Epidemiol 88:102–112

    Article  PubMed  Google Scholar 

  51. Krahn M, Naglie G (2008) The next step in guideline development: incorporating patient preferences. JAMA 300(4):436–438

    Article  CAS  PubMed  Google Scholar 

  52. Grimen H (2009) Power, trust, and risk: some reflections on an absent issue. Med Anthropol Q 23(1):16–33

    Article  PubMed  Google Scholar 

  53. Caron-Flinterman JF, Broerse JEW, Bunders JFG (2005) The experiential knowledge of patients: a new resource for biomedical research? Soc Sci Med 60:2575–2584

    Article  PubMed  Google Scholar 

  54. Otte I, Salloch S, Reinacher-Schick A, Vollmann J (2017) Treatment recommendations within the leeway of clinical guidelines: a qualitative interview study on oncologists’ clinical deliberation. BMC Cancer 17:780

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  55. Sale JEM, Beaton DE, Sujic R, Bogoch ER (2010) “If it was osteoporosis, I would have really hurt myself”. Ambiguity about osteoporosis and osteoporosis care despite a screening program to educate fracture patients. J Eval Clin Pract 16(3):590–596

    PubMed  Google Scholar 

  56. Sale J, Gignac M, Hawker G et al (2011) Decision to take osteoporosis medication in patients who have had a fracture and are ‘high’ risk for future fracture. BMC Musculoskelet Disord 12:92

    Article  PubMed  PubMed Central  Google Scholar 

  57. Sale JEM, Hawker G, Cameron C, Bogoch E, Jain R, Beaton D, Jaglal S, Funnell L (2015) Perceived messages about bone health after a fracture are not consistent across health care providers. Rheumatol Int 35(1):97–103

    Article  PubMed  Google Scholar 

  58. Sale JE, Bogoch E, Hawker G et al (2014) Patient perceptions of provider barriers to post-fracture secondary prevention. Osteoporos Int 25(11):2581–2589. https://doi.org/10.1007/s00198-014-2804-4

    Article  CAS  PubMed  Google Scholar 

  59. Rittenmeyer L, Huffman D, Alagna M, Moore E (2016) The experience of adults who choose watchful waiting or active surveillance as an approach to medical treatment: a qualitative systematic review. JBI Database System Rev Implement Rep 14(2):174–255

    Article  PubMed  Google Scholar 

Download references

Funding

Joanna Sale holds a Canadian Institutes of Health Research New Investigator Salary Award (Funding Reference No. COB-136622).

Author information

Authors and Affiliations

  1. Musculoskeletal Health and Outcomes Research, Li Ka Shing Knowledge Institute, St. Michael’s Hospital, 30 Bond Street, Toronto, Ontario, M5B 1W8, Canada

    J.E.M. Sale, A. Marwah, F. Naeem & W. Yu

  2. Institute of Health Policy, Management and Evaluation, University of Toronto, Health Sciences Building, 155 College Street, Suite 425, Toronto, Ontario, M5T 3M6, Canada

    J.E.M. Sale

  3. Department of Community Health Sciences, Cumming School of Medicine, University of Calgary, 3D10, 3280 Hospital Drive NW, Calgary, Alberta, T2N 4Z6, Canada

    L. Meadows

Authors
  1. J.E.M. Sale
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. A. Marwah
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. F. Naeem
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. W. Yu
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. L. Meadows
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to J.E.M. Sale.

Ethics declarations

Conflict of interest

None.

Additional information

Publisher’s note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Sale, J., Marwah, A., Naeem, F. et al. Evidence of patient beliefs, values, and preferences is not provided in osteoporosis clinical practice guidelines. Osteoporos Int 30, 1325–1337 (2019). https://doi.org/10.1007/s00198-019-04913-y

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s00198-019-04913-y

Keywords

Search

Navigation