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What information can the lay public find about osteoporosis treatment? A descriptive study coding the content and quality of bisphosphonate information on the internet

  • L. N. FuzzellEmail author
  • M. J. Richards
  • L. Fraenkel
  • S. L. Stark
  • M. C. Politi
Original Article

Abstract

Summary

Despite its effectiveness, bisphosphonate use for osteoporosis is low. We assessed bisphosphonate information on the internet and found the most commonly listed benefits/risks were bone density loss, gastrointestinal issues, and jaw necrosis, that risk quantification was rare, and information quality varied. Findings underscore the importance of clinical communication about bisphosphonates.

Introduction

The US Preventative Services Task Force recommends osteoporosis screening and treatment with bisphosphonates in high-risk populations. However, bisphosphonate use among individuals with osteoporosis remains low. The content and quality of information from outside sources may influence individuals’ bisphosphonate decisions. Therefore, we sought to assess the content and quality of osteoporosis treatment information available to the public by conducting an internet search and coding available bisphosphonate information.

Methods

Eleven search terms about osteoporosis and bisphosphonates were entered into four search engines. Two raters assessed websites for information about bisphosphonates, whether and how benefits and side effects were described and quantified, contraindications, and dosing instructions. Coders also assessed website interface and slant/balance of information.

Results

One thousand four hundred seventy-three websites were identified. Two hundred twenty-seven websites met inclusion criteria and were coded. The most common bisphosphonate benefit described was prevention of bone density loss (77.1% of websites). The most common side effects described were gastrointestinal problems (66.1%) and jaw osteonecrosis (58.6%). Most websites did not quantify bisphosphonate benefits (78.0%) or side effects (82.4%). Complementary/integrative health websites (p < .001) and pharmaceutical litigation websites (p < .001) were more often slanted against taking bisphosphonates, compared to all websites coded. General medical knowledge websites were more balanced than other websites (p = .023).

Conclusions

The quality of bisphosphonate information on the internet varies substantially. Providers counseling patients about osteoporosis treatment should inquire about patients’ baseline bisphosphonate knowledge. Providers can complement accurate information and address potential bisphosphonate misconceptions.

Keywords

Bisphosphonates Health communication Online information Osteoporosis 

Abbreviations

AHRQ

Agency for Healthcare Research and Quality

ASPIRE

Advanced Summer Program for Investigation and Research Education

CDC

Centers for Disease Control and Prevention

IBM

International Business Machines

IOF

International Osteoporosis Foundation

IV

Intravenous

PI

Principal investigator

SPSS

Statistical Package for the Social Sciences

Notes

Acknowledgements

This study was supported by the National Institute of Arthritis and Musculoskeletal and Skin Diseases, part of the National Institutes of Health, under Award Number AR060231-06 (PI: Fraenkel), the National Cancer Institute, part of the National Institute of Health, under award T32CA190194 (PIs: Colditz/James), the Foundation for Barnes-Jewish Hospital, Siteman Cancer Center, and Advanced Summer Program for Investigation and Research Education (ASPIRE) of the Clinical Research Training Center at Washington University School of Medicine. The content of this manuscript is solely the responsibility of the authors and does not necessarily represent the official views of the organizations supporting this work.

Compliance with ethical standards

Conflicts of interest

None.

References

  1. 1.
    Wright Nicole C, Looker Anne C, Saag Kenneth G, Curtis Jeffrey R, Delzell Elizabeth S, Randall Susan, Dawson-Hughes Bess. The recent prevalence of osteoporosis and low bone mass in the United States based on bone mineral density at the femoral neck or lumbar spine. J Bone Miner Res 2014;29(11):2520–2526.  https://doi.org/10.1002/jbmr.2269
  2. 2.
    Kanis JA, Melton LJ, Christiansen C, Johnston CC, Khaltaev N (1994) The diagnosis of osteoporosis. J Bone Miner Res 9(8):1137–1141.  https://doi.org/10.1002/jbmr.5650090802 CrossRefGoogle Scholar
  3. 3.
    Bentler SE, Liu L, Obrizan M, Cook EA, Wright KB, Geweke JF, Chrischilles EA, Pavlik CE, Wallace RB, Ohsfeldt RL, Jones MP, Rosenthal GE, Wolinsky FD (2009) The aftermath of hip fracture: discharge placement, functional status change, and mortality. Am J Epidemiol 170(10):1290–1299.  https://doi.org/10.1093/aje/kwp266 CrossRefGoogle Scholar
  4. 4.
    Watts NB (2001) Osteoporotic vertebral fractures. Neurosurg Focus 10:3CrossRefGoogle Scholar
  5. 5.
    Curry SJ, Krist AH, Owens DK, Barry MJ, Caughey AB, Davidson KW, Doubeni CA, Epling JW, Kemper AR, Kubik M (2018) Screening for osteoporosis to prevent fractures: US Preventive Services Task Force recommendation statement. JAMA 319(24):2521–2531CrossRefGoogle Scholar
  6. 6.
    Qaseem A, Forciea MA, McLean RM, Denberg TD, for the Clinical Guidelines Committee of the American College of Physicians (2017) Treatment of low bone density or osteoporosis to prevent fractures in men and women: a clinical practice guideline update from the American College of Physicians. Ann Intern Med 166(11):818.  https://doi.org/10.7326/M15-1361 CrossRefGoogle Scholar
  7. 7.
    Cosman F, de Beur SJ, MS LB, Lewiecki EM, Tanner B, Randall S, Lindsay R et al (2014) Osteoporos Int 25(10):2359–2381.  https://doi.org/10.1007/s00198-014-2794-2 CrossRefGoogle Scholar
  8. 8.
    Eriksen EF, Díez-Pérez A, Boonen S (2014) Update on long-term treatment with bisphosphonates for postmenopausal osteoporosis: a systematic review. Bone 58:126–135.  https://doi.org/10.1016/j.bone.2013.09.023 CrossRefGoogle Scholar
  9. 9.
    Adler RA, Fuleihan GE-H, Bauer DC, Camacho PM, Clarke BL, Clines GA, Compston JE, Drake MT, Edwards BJ, Favus MJ, Greenspan SL, McKinney R, Pignolo RJ, Sellmeyer DE (2016) Managing osteoporosis in patients on long-term bisphosphonate treatment: report of a task force of the American Society for Bone and Mineral Research. J Bone Miner Res 31(1):16–35.  https://doi.org/10.1002/jbmr.2708 CrossRefGoogle Scholar
  10. 10.
    Black DM, Thompson DE, Bauer DC, Ensrud K, Musliner T, Hochberg MC, Nevitt MC, Suryawanshi S, Cummings SR (2000) Fracture risk reduction with alendronate in women with osteoporosis: the fracture intervention trial. J Clin Endocrinol Metab 85(11):4118–4124.  https://doi.org/10.1210/jcem.85.11.6953 CrossRefGoogle Scholar
  11. 11.
    Viswanathan M, Reddy S, Berkman N, Cullen K, Middleton JC, Nicholson WK, Kahwati LC (2018) Screening to prevent osteoporotic fractures: updated evidence report and systematic review for the Us Preventive Services Task Force. JAMA 319(24):2532–2551.  https://doi.org/10.1001/jama.2018.6537 CrossRefGoogle Scholar
  12. 12.
    Farley JF, Blalock SJ (2009) Trends and determinants of prescription medication use for treatment of osteoporosis. Am J Health Syst Pharm 66(13):1191–1201.  https://doi.org/10.2146/ajhp080248 CrossRefGoogle Scholar
  13. 13.
    Solomon DH, Johnston SS, Boytsov NN, McMorrow D, Lane JM, Krohn KD (2014) Osteoporosis medication use after hip fracture in U.S. patients between 2002 and 2011. J Bone Miner Res 29(9):1929–1937.  https://doi.org/10.1002/jbmr.2202 CrossRefGoogle Scholar
  14. 14.
    Jha S, Wang Z, Laucis N, Bhattacharyya T (2015) Trends in media reports, oral bisphosphonate prescriptions, and hip fractures 1996–2012: an ecological analysis. J Bone Miner Res 30(12):2179–2187.  https://doi.org/10.1002/jbmr.2565 CrossRefGoogle Scholar
  15. 15.
    Cramer JA, Amonkar MM, Hebborn A, Altman R (2005) Compliance and persistence with bisphosphonate dosing regimens among women with postmenopausal osteoporosis. Curr Med Res Opin 21(9):1453–1460.  https://doi.org/10.1185/030079905X61875 CrossRefGoogle Scholar
  16. 16.
    Lo JC, Pressman AR, Omar MA, Ettinger B (2006) Persistence with weekly alendronate therapy among postmenopausal women. Osteoporos Int 17(6):922–928.  https://doi.org/10.1007/s00198-006-0085-2 CrossRefGoogle Scholar
  17. 17.
    Sale JE, Gignac MA, Hawker G, Frankel L, Beaton D, Bogoch E, Elliot-Gibson V (2011 [cited 2018 Jun 7]) Decision to take osteoporosis medication in patients who have had a fracture and are “high” risk for future fracture: a qualitative study. BMC Musculoskelet Disord 12(1).  https://doi.org/10.1186/1471-2474-12-92
  18. 18.
    Khosla S, Burr D, Cauley J, Dempster DW, Ebeling PR, Felsenberg D, Gagel RF, Gilsanz V, Guise T, Koka S, McCauley LK, McGowan J, McKee MD, Mohla S, Pendrys DG, Raisz LG, Ruggiero SL, Shafer DM, Shum L, Silverman SL, Poznak CHV, Watts N, Woo S-B, Shane E (2007) Bisphosphonate-associated osteonecrosis of the jaw: report of a task force of the American Society for Bone and Mineral Research. J Bone Miner Res 22(10):1479–1491.  https://doi.org/10.1359/jbmr.0707onj]
  19. 19.
    Lewiecki EM (2010) Risk communication and shared decision making in the care of patients with osteoporosis. J Clin Densitom 13(4):335–345.  https://doi.org/10.1016/j.jocd.2010.06.005 CrossRefGoogle Scholar
  20. 20.
    Amante DJ, Hogan TP, Pagoto SL, English TM, Lapane KL (2015 [cited 2018 Sep 6]) Access to care and use of the Internet to search for health information: results from the US National Health Interview Survey. J Med Internet Res 17(4)Google Scholar
  21. 21.
    Hong YA, Cho J (2017) Has the digital health divide widened? Trends of health-related internet use among older adults from 2003 to 2011. J Gerontol B Psychol Sci Soc Sci 72(5):856–863.  https://doi.org/10.1093/geronb/gbw100 Google Scholar
  22. 22.
    Peterson G, Aslani P, Williams KA (2003) How do consumers search for and appraise information on medicines on the Internet? A qualitative study using focus groups. J Med Internet Res 5(4):e33.  https://doi.org/10.2196/jmir.5.4.e33 CrossRefGoogle Scholar
  23. 23.
    Dunne SS, Dunne CP (2015) What do people really think of generic medicines? A systematic review and critical appraisal of literature on stakeholder perceptions of generic drugs. BMC Med 13(1):173.  https://doi.org/10.1186/s12916-015-0415-3 CrossRefGoogle Scholar
  24. 24.
    Van Deursen AJ, Van Dijk JA (2009) Using the Internet: skill related problems in users’ online behavior. Interact Comput 21(5–6):393–402CrossRefGoogle Scholar
  25. 25.
    Joseph-Williams N, Newcombe R, Politi M, Durand M-A, Sivell S, Stacey D, O’Connor A, Volk RJ, Edwards A, Bennett C (2014) Toward minimum standards for certifying patient decision aids: a modified Delphi consensus process. Med Decis Mak 34(6):699–710CrossRefGoogle Scholar
  26. 26.
    Fagerlin A, Zikmund-Fisher BJ, Ubel PA (2011) Helping patients decide: ten steps to better risk communication. J Natl Cancer Inst 103(19):1436–1443CrossRefGoogle Scholar
  27. 27.
    O’Connor AM, Cranney A. User manual—acceptability [document on the Internet] [Internet]. Ottawa: Ottawa Hospital Research Institute; 2002 [cited 2018 Jul 10]. Available from: http://decisionaid.ohri.ca/docs/develop/User_Manuals/UM_Acceptability.pdf
  28. 28.
    Kennel KA, Drake MT (2009) Adverse effects of bisphosphonates: implications for osteoporosis management. Mayo Clinic Proceedings Elsevier 84:632–638CrossRefGoogle Scholar
  29. 29.
    Cryer B, Bauer DC (2002) Oral bisphosphonates and upper gastrointestinal tract problems: what is the evidence? Mayo Clin Proc 77(10):1031–1043.  https://doi.org/10.4065/77.10.1031 CrossRefGoogle Scholar
  30. 30.
    Trevena LJ, Zikmund-Fisher BJ, Edwards A, Gaissmaier W, Galesic M, Han PK, King J, Lawson ML, Linder SK, Lipkus I, Ozanne E, Peters E, Timmermans D, Woloshin S (2013) Presenting quantitative information about decision outcomes: a risk communication primer for patient decision aid developers. BMC Med Inform Decis Mak 13(2):S7.  https://doi.org/10.1186/1472-6947-13-S2-S7 CrossRefGoogle Scholar
  31. 31.
    Lewiecki EM, Rudolph LA, Kiebzak GM, Chavez JR, Thorpe BM (2006) Assessment of osteoporosis-website quality. Osteoporos Int 17(5):741–752.  https://doi.org/10.1007/s00198-005-0042-5 CrossRefGoogle Scholar
  32. 32.
    Joshi A, Bhangoo RS, Kumar K (2011) Quality of nutrition related information on the internet for osteoporosis patients: a critical review. Technol Health Care 19(6):391–400.  https://doi.org/10.3233/THC-2011-0643 Google Scholar
  33. 33.
    Pérez-López FR, Roncero GRP (2006) Assessing the content and quality of information on the treatment of postmenopausal osteoporosis on the World Wide Web. Gynecol Endocrinol 22(12):669–675.  https://doi.org/10.1080/09513590601012603 CrossRefGoogle Scholar
  34. 34.
    Rachner TD, Khosla S, Hofbauer LC (2011) Osteoporosis: now and the future. Lancet 377(9773):1276–1287.  https://doi.org/10.1016/S0140-6736(10)62349-5 CrossRefGoogle Scholar

Copyright information

© International Osteoporosis Foundation and National Osteoporosis Foundation 2019

Authors and Affiliations

  1. 1.School of Medicine, Department of Surgery, Division of Public Health SciencesWashington University in St. LouisSt. LouisUSA
  2. 2.School of Medicine, Department of RheumatologyYale UniversityNew HavenUSA
  3. 3.School of Medicine, Department of Occupational TherapyWashington University in St. LouisSt. LouisUSA

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