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Assessing Patient Preferences for Treatment Options and Process of Care in Inflammatory Bowel Disease: A Critical Review of Quantitative Data

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Abstract

Inflammatory bowel disease (IBD), consisting of both Crohn’s disease (CD) and ulcerative colitis (UC), are chronic inflammatory conditions of the intestinal tract. As there is no cure for either CD or UC, patients with these conditions face numerous treatment decisions regarding their disease. The aim of this review is to evaluate literature regarding quantitative studies of patient preferences in therapy for IBD with a focus on the emerging technique of stated preference and its application in IBD. Numerous simple survey-based studies have been performed evaluating IBD patients’ preferences for medication frequency, mode of delivery, potential adverse events, etc., as well as variations in these preferences. These studies are limited, however, as they are purely descriptive in nature with limited quantitative information on the relative value of treatment alternatives. Time trade-off and standard-gamble studies have also been utilized to quantify patient utility for various treatment options or outcomes. However, these types of studies suffer from inaccurate assumptions regarding patient choice behavior. Stated preference is an emerging robust methodology increasingly utilized in health care that can determine the relative utility for a therapy option as well as its specific attributes (such as efficacy or adverse side effects). Stated preference techniques have begun to be applied in IBD and offer an innovative way of examining the numerous therapy options these patients and their providers face.

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References

  1. Cosnes J, Gower-Rousseau C, Seksik P, Cortot A. Epidemiology and natural history of inflammatory bowel diseases. Gastroenterology. 2011;140:1785–94.

    PubMed  Google Scholar 

  2. Harrell LE, Hanauer SB. Mesalamine derivatives in the treatment of Crohn’s disease. Gastroenterol Clin North Am. 2004;33:303–17, ix–x.

    Google Scholar 

  3. Hanauer S, Sninsky C, Robinson M, et al. An oral preparation of mesalamine as long-term maintenance therapy for ulcerative colitis: a randomized, placebo-controlled trial. The Mesalamine Study Group. Ann Intern Med. 1996;124:204–11.

    Google Scholar 

  4. Hanauer SB, Sandborn WJ, Kornbluth A, et al. Delayed-release oral mesalamine at 4.8 g/day (800 mg tablet) for the treatment of moderately active ulcerative colitis: the ASCEND II trial. Am J Gastroenterol. 2005;100:2478–85.

    PubMed  CAS  Google Scholar 

  5. Sninsky CA, Cort DH, Shanahan F, et al. Oral mesalamine (Asacol) for mildly to moderately active ulcerative colitis: a multicenter study. Ann Intern Med. 1991;115:350–5.

    PubMed  CAS  Google Scholar 

  6. Hanauer S, Schwartz J, Robinson M, et al. Mesalamine capsules for treatment of active ulcerative colitis: results of a controlled trial. Pentasa Study Group. Am J Gastroenterol. 1993;88:1188–97.

    PubMed  CAS  Google Scholar 

  7. Levine DS, Riff DS, Pruitt R, et al. A randomized, double blind, dose-response comparison of balsalazide (6.75 g), balsalazide (2.25 g), and mesalamine (2.4 g) in the treatment of active, mild-to-moderate ulcerative colitis. Am J Gastroenterol. 2002;97:1398–407.

    PubMed  CAS  Google Scholar 

  8. Sandborn WJ, Regula J, Feagan BG, et al. Delayed-release oral mesalamine 4.8 g/day (800-mg tablet) is effective for patients with moderately active ulcerative colitis. Gastroenterology. 2009;137:1934–43.e1–3.

    Google Scholar 

  9. Faubion WA Jr, Loftus EV Jr, Harmsen WS, Zinsmeister AR, Sandborn WJ. The natural history of corticosteroid therapy for inflammatory bowel disease: a population-based study. Gastroenterology. 2001;121:255–60.

    PubMed  CAS  Google Scholar 

  10. Actis GC, Fadda M, David E, Sapino A. Colectomy rate in steroid-refractory colitis initially responsive to cyclosporin: a long-term retrospective cohort study. BMC Gastroenterol. 2007;7:13.

    PubMed  Google Scholar 

  11. Gonzalez-Lama Y, Gisbert JP, Mate J. The role of tacrolimus in inflammatory bowel disease: a systematic review. Dig Dis Sci. 2006;51:1833–40.

    PubMed  CAS  Google Scholar 

  12. Michelassi F, Lee J, Rubin M, et al. Long-term functional results after ileal pouch anal restorative proctocolectomy for ulcerative colitis: a prospective observational study. Ann Surg 2003;238:433–41; discussion 442–5.

    Google Scholar 

  13. Bewtra M, Su C, Lewis JD. Trends in hospitalization rates for inflammatory bowel disease in the United States. Clin Gastroenterol Hepatol. 2007;5:597–601.

    PubMed  Google Scholar 

  14. Langholz E, Munkholm P, Davidsen M, Binder V. Course of ulcerative colitis: analysis of changes in disease activity over years. Gastroenterology. 1994;107:3–11.

    PubMed  CAS  Google Scholar 

  15. Blam ME, Stein RB, Lichtenstein GR. Integrating anti-tumor necrosis factor therapy in inflammatory bowel disease: current and future perspectives. Am J Gastroenterol. 2001;96:1977–97.

    PubMed  CAS  Google Scholar 

  16. Pariente B, Cosnes J, Danese S, et al. Development of the Crohn’s disease digestive damage score, the Lemann score. Inflamm Bowel Dis. 2011;17:1415–22.

    PubMed  Google Scholar 

  17. Thia KT, Sandborn WJ, Harmsen WS, Zinsmeister AR, Loftus EV Jr. Risk factors associated with progression to intestinal complications of Crohn’s disease in a population-based cohort. Gastroenterology. 2010;139:1147–55.

    PubMed  Google Scholar 

  18. Jess T, Winther KV, Munkholm P, Langholz E, Binder V. Mortality and causes of death in Crohn’s disease: follow-up of a population-based cohort in Copenhagen County, Denmark. Gastroenterology. 2002;122:1808–14.

    PubMed  Google Scholar 

  19. Bewtra M, Kaiser LM, TenHave T, Lewis JD. Crohn’s disease and ulcerative colitis are associated with elevated standardized mortality ratios: a meta-analysis. Inflamm Bowel Dis. 2013;19:599–613.

    PubMed  Google Scholar 

  20. Hanauer SB, Stromberg U. Oral Pentasa in the treatment of active Crohn’s disease: a meta-analysis of double-blind, placebo-controlled trials. Clin Gastroenterol Hepatol. 2004;2:379–88.

    PubMed  CAS  Google Scholar 

  21. Hanauer SB, Korelitz BI, Rutgeerts P, et al. Postoperative maintenance of Crohn’s disease remission with 6-mercaptopurine, mesalamine, or placebo: a 2-year trial. Gastroenterology. 2004;127:723–9.

    PubMed  CAS  Google Scholar 

  22. Colombel JF, Sandborn WJ, Reinisch W, et al. Infliximab, azathioprine, or combination therapy for Crohn’s disease. N Engl J Med. 2010;362:1383–95.

    PubMed  CAS  Google Scholar 

  23. Burger D, Travis S. Conventional medical management of inflammatory bowel disease. Gastroenterology. 2011;140(1827–1837):e2.

    PubMed  Google Scholar 

  24. McDonald JW, Feagan BG, Jewell D, Brynskov J, Stange EF, Macdonald JK. Cyclosporine for induction of remission in Crohn’s disease. Cochrane Database Syst Rev. 2005;(2):CD000297.

  25. Feagan BG, Fedorak RN, Irvine EJ, et al. A comparison of methotrexate with placebo for the maintenance of remission in Crohn’s disease. North American Crohn’s Study Group Investigators. N Engl J Med. 2000;342:1627–32.

    PubMed  CAS  Google Scholar 

  26. Prefontaine E, Macdonald JK, Sutherland LR. Azathioprine or 6-mercaptopurine for induction of remission in Crohn’s disease. Cochrane Database Syst Rev. 2010;(6):CD000545.

  27. Prefontaine E, Sutherland LR, Macdonald JK, Cepoiu M. Azathioprine or 6-mercaptopurine for maintenance of remission in Crohn’s disease. Cochrane Database Syst Rev. 2009;(1):CD000067.

  28. Hanauer SB, Feagan BG, Lichtenstein GR, et al. Maintenance infliximab for Crohn’s disease: the ACCENT I randomised trial. Lancet. 2002;359:1541–9.

    PubMed  CAS  Google Scholar 

  29. Colombel JF, Sandborn WJ, Rutgeerts P, et al. Adalimumab for maintenance of clinical response and remission in patients with Crohn’s disease: the CHARM trial. Gastroenterology. 2007;132:52–65.

    PubMed  CAS  Google Scholar 

  30. Sandborn WJ, Rutgeerts P, Enns R, et al. Adalimumab induction therapy for Crohn disease previously treated with infliximab: a randomized trial. Ann Intern Med. 2007;146:829–38.

    PubMed  Google Scholar 

  31. Schreiber S, Rutgeerts P, Fedorak RN, et al. A randomized, placebo-controlled trial of certolizumab pegol (CDP870) for treatment of Crohn’s disease. Gastroenterology. 2005;129:807–18.

    PubMed  CAS  Google Scholar 

  32. Sandborn WJ, Colombel JF, Enns R, et al. Natalizumab induction and maintenance therapy for Crohn’s disease. N Engl J Med. 2005;353:1912–25.

    PubMed  CAS  Google Scholar 

  33. Osterman MT. Mucosal healing in inflammatory bowel disease. J Clin Gastroenterol. 2013;47:212–21.

    PubMed  Google Scholar 

  34. Lichtenstein GR, Cohen R, Feagan BG, et al. Safety of infliximab and other Crohn’s disease therapies: Treat™ Registry data with 24,575 patient-years of follow-up. Am J Gastroenterol. 2008;103.

  35. Lewis JD, Gelfand JM, Troxel AB, et al. Immunosuppressant medications and mortality in inflammatory bowel disease. Am J Gastroenterol 2008;103:1428–35; quiz 1436.

    Google Scholar 

  36. Lichtenstein GR, Feagan BG, Cohen RD, et al. Serious infections and mortality in association with therapies for Crohn’s disease: TREAT Registry. Clin Gastroenterol Hepatol. 2006;4:621–30.

    PubMed  CAS  Google Scholar 

  37. Toruner M, Loftus EV Jr, Harmsen WS, et al. Risk factors for opportunistic infections in patients with inflammatory bowel disease. Gastroenterology. 2008;134:929–36.

    PubMed  Google Scholar 

  38. Siegel CA, Sands BE. Review article: practical management of inflammatory bowel disease patients taking immunomodulators. Aliment Pharmacol Ther. 2005;22:1–16.

    PubMed  CAS  Google Scholar 

  39. Siegel CA, Hur C, Korzenik JR, Gazelle GS, Sands BE. Risks and benefits of infliximab for the treatment of Crohn’s disease. Clin Gastroenterol Hepatol 2006;4:1017–24; quiz 976.

    Google Scholar 

  40. Colombel JF, Loftus EV Jr, Tremaine WJ, et al. The safety profile of infliximab in patients with Crohn’s disease: the Mayo clinic experience in 500 patients. Gastroenterology. 2004;126:19–31.

    PubMed  CAS  Google Scholar 

  41. Carson KR, Focosi D, Major EO, et al. Monoclonal antibody-associated progressive multifocal leucoencephalopathy in patients treated with rituximab, natalizumab, and efalizumab: a review from the Research on Adverse Drug Events and Reports (RADAR) project. Lancet Oncol. 2009;10:816–24.

    PubMed  CAS  Google Scholar 

  42. Marehbian J, Arrighi HM, Hass S, Tian H, Sandborn WJ. Adverse events associated with common therapy regimens for moderate-to-severe Crohn’s disease. Am J Gastroenterol. 2009;104:2524–33.

    PubMed  Google Scholar 

  43. Kane S, Khatibi B, Reddy D. Higher incidence of abnormal Pap smears in women with inflammatory bowel disease. Am J Gastroenterol. 2008;103:631–6.

    PubMed  Google Scholar 

  44. Hutfless S, Fireman B, Kane S, Herrinton LJ. Screening differences and risk of cervical cancer in inflammatory bowel disease. Aliment Pharmacol Ther. 2008;28:598–605.

    PubMed  CAS  Google Scholar 

  45. Kandiel A, Fraser AG, Korelitz BI, Brensinger C, Lewis JD. Increased risk of lymphoma among inflammatory bowel disease patients treated with azathioprine and 6-mercaptopurine. Gut. 2005;54:1121–5.

    PubMed  CAS  Google Scholar 

  46. Siegel CA, Marden SM, Persing SM, Larson RJ, Sands BE. Risk of lymphoma associated with combination anti-tumor necrosis factor and immunomodulator therapy for the treatment of Crohn’s disease: a meta-analysis. Clin Gastroenterol Hepatol. 2009;7:874–81.

    PubMed  CAS  Google Scholar 

  47. Herrinton LJ, Liu L, Weng X, Lewis JD, Hutfless S, Allison JE. Role of thiopurine and anti-TNF therapy in lymphoma in inflammatory bowel disease. Am J Gastroenterol. 2011;106:2146–53.

    PubMed  CAS  Google Scholar 

  48. Beaugerie L, Brousse N, Bouvier AM, et al. Lymphoproliferative disorders in patients receiving thiopurines for inflammatory bowel disease: a prospective observational cohort study. Lancet. 2009;374:1617–25.

    PubMed  CAS  Google Scholar 

  49. Khan WA, Yu L, Eisenbrey AB, et al. Hepatosplenic gamma/delta T-cell lymphoma in immunocompromised patients: report of two cases and review of literature. Am J Clin Pathol. 2001;116:41–50.

    PubMed  CAS  Google Scholar 

  50. Mackey AC, Green L, Leptak C, Avigan M. Hepatosplenic T cell lymphoma associated with infliximab use in young patients treated for inflammatory bowel disease: update. J Pediatr Gastroenterol Nutr. 2009;48:386–8.

    PubMed  Google Scholar 

  51. Moran G, Dillon J, Green J. Crohn’s disease, hepatosplenic T-cell lymphoma and no biological therapy: are we barking up the wrong tree? Inflamm Bowel Dis. 2009;15:1281–2.

    PubMed  Google Scholar 

  52. Eaden JA, Abrams KR, Mayberry JF. The risk of colorectal cancer in ulcerative colitis: a meta-analysis. Gut. 2001;48:526–35.

    PubMed  CAS  Google Scholar 

  53. Rutgeerts P, Feagan BG, Lichtenstein GR, et al. Comparison of scheduled and episodic treatment strategies of infliximab in Crohn’s disease. Gastroenterology. 2004;126:402–13.

    PubMed  CAS  Google Scholar 

  54. Rutgeerts P, Sandborn WJ, Feagan BG, et al. Infliximab for induction and maintenance therapy for ulcerative colitis. N Engl J Med. 2005;353:2462–76.

    PubMed  CAS  Google Scholar 

  55. Schreiber S, Khaliq-Kareemi M, Lawrance IC, et al. Maintenance therapy with certolizumab pegol for Crohn’s disease. N Engl J Med. 2007;357:239–50.

    PubMed  CAS  Google Scholar 

  56. Su C, Lichtenstein GR. Treatment of inflammatory bowel disease with azathioprine and 6-mercaptopurine. Gastroenterol Clin North Am 2004;33:209–34, viii.

    Google Scholar 

  57. Kaplan GG, McCarthy EP, Ayanian JZ, Korzenik J, Hodin R, Sands BE. Impact of hospital volume on postoperative morbidity and mortality following a colectomy for ulcerative colitis. Gastroenterology. 2008;134:680–7.

    PubMed  Google Scholar 

  58. Roberts SE, Williams JG, Yeates D, Goldacre MJ. Mortality in patients with and without colectomy admitted to hospital for ulcerative colitis and Crohn’s disease: record linkage studies. BMJ. 2007;335:1033.

    PubMed  Google Scholar 

  59. Alves A, Panis Y, Mathieu P, et al. Postoperative mortality and morbidity in French patients undergoing colorectal surgery: results of a prospective multicenter study. Arch Surg 2005;140:278–83, discussion 284.

    Google Scholar 

  60. Hyman NH, Cataldo P, Osler T. Urgent subtotal colectomy for severe inflammatory bowel disease. Dis Colon Rectum. 2005;48:70–3.

    PubMed  Google Scholar 

  61. Fazio VW, Ziv Y, Church JM, et al. Ileal pouch-anal anastomoses complications and function in 1005 patients. Ann Surg. 1995;222:120–7.

    PubMed  CAS  Google Scholar 

  62. Delaney CP, Fazio VW, Remzi FH, et al. Prospective, age-related analysis of surgical results, functional outcome, and quality of life after ileal pouch-anal anastomosis. Ann Surg. 2003;238:221–8.

    PubMed  Google Scholar 

  63. Alves A, Panis Y, Bouhnik Y, Maylin V, Lavergne-Slove A, Valleur P. Subtotal colectomy for severe acute colitis: a 20-year experience of a tertiary care center with an aggressive and early surgical policy. J Am Coll Surg. 2003;197:379–85.

    PubMed  Google Scholar 

  64. Pal S, Sahni P, Pande GK, Acharya SK, Chattopadhyay TK. Outcome following emergency surgery for refractory severe ulcerative colitis in a tertiary care centre in India. BMC Gastroenterol. 2005;5:39.

    PubMed  Google Scholar 

  65. Bach SP, Mortensen NJ. Ileal pouch surgery for ulcerative colitis. World J Gastroenterol. 2007;13:3288–300.

    PubMed  Google Scholar 

  66. Sacristan JA. Patient-centered medicine and patient-oriented research: improving health outcomes for individual patients. BMC Med Inform Decis Mak. 2013;13:6.

    PubMed  Google Scholar 

  67. Truog RD. Patients and doctors: evolution of a relationship. N Engl J Med. 2012;366:581–5.

    PubMed  CAS  Google Scholar 

  68. Laine C, Davidoff F. Patient-centered medicine: a professional evolution. JAMA. 1996;275:152–6.

    PubMed  CAS  Google Scholar 

  69. Mead N, Bower P. Patient-centredness: a conceptual framework and review of the empirical literature. Soc Sci Med. 2000;51:1087–110.

    PubMed  CAS  Google Scholar 

  70. Rademakers J, Delnoij D, Nijman J, de Boer D. Educational inequalities in patient-centred care: patients’ preferences and experiences. BMC Health Serv Res. 2012;12:261

    Google Scholar 

  71. Bensing J. Bridging the gap. The separate worlds of evidence-based medicine and patient-centered medicine. Patient Educ Couns. 2000;39:17–25.

    PubMed  CAS  Google Scholar 

  72. Mohamed AF, Hauber AB, Johnson FR, Coon CD. Patient preferences and linear scoring rules for patient-reported outcomes. Patient. 2010;3:217–27.

    PubMed  Google Scholar 

  73. Bala MV, Zarkin GA. Are QALYs an appropriate measure for valuing morbidity in acute diseases? Health Econ. 2000;9:177–80.

    PubMed  CAS  Google Scholar 

  74. Giesler RB, Ashton CM, Brody B, et al. Assessing the performance of utility techniques in the absence of a gold standard. Med Care. 1999;37:580–8.

    PubMed  CAS  Google Scholar 

  75. O’Leary JF, Fairclough DL, Jankowski MK, Weeks JC. Comparison of time-tradeoff utilities and rating scale values of cancer patients and their relatives: evidence for a possible plateau relationship. Med Decis Making. 1995;15:132–7.

    PubMed  Google Scholar 

  76. Lin MR, Yu WY, Wang SC. Examination of assumptions in using time tradeoff and standard gamble utilities in individuals with spinal cord injury. Arch Phys Med Rehabil. 2012;93:245–52.

    PubMed  Google Scholar 

  77. Bleichrodt H, Pinto J. The validity of QALYs under non-expected utility. Econ J. 2005;115:533–50.

    Google Scholar 

  78. Brazier J, Rowen D, Yang Y, Tsuchiya A. Comparison of health state utility values derived using time trade-off, rank and discrete choice data anchored on the full health-dead scale. Eur J Health Econ. 2012;13:575–87.

    PubMed  Google Scholar 

  79. Hauber AB. Healthy-years equivalent: wounded but not yet dead. Expert Rev Pharmacoecon Outcomes Res. 2009;9:265–9.

    PubMed  Google Scholar 

  80. Johnson FR. Editorial: moving the QALY forward or just stuck in traffic? Value Health. 2009;12(Suppl 1):S38–9.

    PubMed  Google Scholar 

  81. Nord E, Daniels N, Kamlet M. QALYs: some challenges. Value Health. 2009;12(Suppl 1):S10–5.

    PubMed  Google Scholar 

  82. Wong S, Walker JR, Carr R, et al. The information needs and preferences of persons with longstanding inflammatory bowel disease. Can J Gastroenterol. 2012;26:525–31.

    PubMed  Google Scholar 

  83. Conrad S, Huppe A, Raspe H. Preference of patients with inflammatory bowel disease regarding information and shared decision-making: results from a cross-sectional survey in Germany. Z Gastroenterol. 2012;50:364–72.

    PubMed  CAS  Google Scholar 

  84. Bernstein KI, Promislow S, Carr R, Rawsthorne P, Walker JR, Bernstein CN. Information needs and preferences of recently diagnosed patients with inflammatory bowel disease. Inflamm Bowel Dis. 2011;17:590–8.

    PubMed  Google Scholar 

  85. Siegel C, Schwartz L, Woloshin S, et al. When should ulcerative colitis patients undergo colectomy for dysplasia? Mismatch between patient preferences and physician recommendations. Inflamm Bowel Disease. 2010;16:1658–62.

    Google Scholar 

  86. Baars J, Siegel C, van’t Spijker A, Markus T, Kuipers E, van der Woude C. Inflammatory bowel disease-patients are insufficiently educated about the basic characteristics of their disease and the associated risk of colorectal cancer. Dig Liver Dis 2010;42:777–84.

    Google Scholar 

  87. Allen PB, Lindsay H, Tham TC. How do patients with inflammatory bowel disease want their biological therapy administered? BMC Gastroenterol 2010;10:1

    Google Scholar 

  88. Lewis JR, Konda V, Rubin DT. Genetic testing for inflammatory bowel disease: focus group analysis of patients and family members. Genet Test Mol Biomarkers. 2009;13:495–503.

    PubMed  Google Scholar 

  89. Gray JR, Leung E, Scales J. Treatment of ulcerative colitis from the patient’s perspective: a survey of preferences and satisfaction with therapy. Aliment Pharmacol Ther. 2009;29:1114–20.

    PubMed  CAS  Google Scholar 

  90. Knopf JM, Hornung RW, Slap GB, DeVellis RF, Britto MT. Views of treatment decision making from adolescents with chronic illnesses and their parents: a pilot study. Health Expect. 2008;11:343–54.

    PubMed  Google Scholar 

  91. Kennedy ED, To T, Steinhart AH, Detsky A, Llewellyn-Thomas HA, McLeod RS. Do patients consider postoperative maintenance therapy for Crohn’s disease worthwhile? Inflamm Bowel Dis. 2008;14:224–35.

    PubMed  Google Scholar 

  92. Konda V, Huo D, Hermes G, Liu M, Patel R, Rubin DT. Do patients with inflammatory bowel disease want genetic testing? Inflamm Bowel Dis. 2006;12:497–502.

    PubMed  Google Scholar 

  93. Rutter MD, Saunders BP, Wilkinson KH, Schofield G, Forbes A. Intangible costs and benefits of ulcerative colitis surveillance: a patient survey. Dis Colon Rectum. 2006;49:1177–83.

    PubMed  Google Scholar 

  94. Cheung WY, Dove J, Lervy B, Russell IT, Williams JG. Shared care in gastroenterology: GPs’ views of open access to out-patient follow-up for patients with inflammatory bowel disease. Fam Pract. 2002;19:53–6.

    PubMed  CAS  Google Scholar 

  95. Green TJ, Issenman RM, Jacobson K. Patients’ diets and preferences in a pediatric population with inflammatory bowel disease. Can J Gastroenterol. 1998;12:544–9.

    PubMed  CAS  Google Scholar 

  96. Probert CS, Mayberry JF. Inflammatory bowel disease: patients’ expectations in the 1990s. J R Soc Med. 1991;84:131–2.

    PubMed  CAS  Google Scholar 

  97. Johnson FR, Hauber AB, Osoba D, Hsu MA, Coombs J, Copley-Merriman C. Are chemotherapy patients’ HRQoL importance weights consistent with linear scoring rules? A stated-choice approach. Qual Life Res. 2006;15:285–98.

    PubMed  Google Scholar 

  98. Siegel CA, Levy LC, Mackenzie TA, Sands BE. Patient perceptions of the risks and benefits of infliximab for the treatment of inflammatory bowel disease. Inflamm Bowel Dis. 2008;14:1–6.

    PubMed  Google Scholar 

  99. Arseneau KO, Sultan S, Provenzale DT, et al. Do patient preferences influence decisions on treatment for patients with steroid-refractory ulcerative colitis? Clin Gastroenterol Hepatol. 2006;4:1135–42.

    PubMed  Google Scholar 

  100. McLeod RS, Churchill DN, Lock AM, Vanderburgh S, Cohen Z. Quality of life of patients with ulcerative colitis preoperatively and postoperatively. Gastroenterology. 1991;101:1307–13.

    PubMed  CAS  Google Scholar 

  101. Kennedy ED, Detsky AS, Llewellyn-Thomas HA, et al. Can the standard gamble be used to determine utilities for uncertain health states? An example using postoperative maintenance therapy in Crohn’s disease. Med Decis Mak. 2000;20:72–8.

    CAS  Google Scholar 

  102. Arseneau KO, Cohn SM, Cominelli F, Connors AF Jr. Cost-utility of initial medical management for Crohn’s disease perianal fistulae. Gastroenterology. 2001;120:1640–56.

    PubMed  CAS  Google Scholar 

  103. Byrne CM, Solomon MJ, Young JM, Selby W, Harrison JD. Patient preferences between surgical and medical treatment in Crohn’s disease. Dis Colon Rectum. 2007;50:586–97.

    PubMed  Google Scholar 

  104. Waljee AK, Higgins PD, Waljee JF, et al. Perceived and actual quality of life with ulcerative colitis: a comparison of medically and surgically treated patients. Am J Gastroenterol. 2011;106:794–9.

    PubMed  Google Scholar 

  105. Waljee AK, Morris AM, Waljee JF, Higgins PD. Individual health discount rate in patients with ulcerative colitis. Inflamm Bowel Dis. 2011;17:1328–32.

    PubMed  Google Scholar 

  106. Brown LK, Waljee AK, Higgins PD, Waljee JF, Morris AM. Proximity to disease and perception of utility: physicians’ vs patients’ assessment of treatment options for ulcerative colitis. Dis Colon Rectum. 2011;54:1529–36.

    PubMed  Google Scholar 

  107. Leshno M. On using the standard gamble to determine utilities for uncertain health states. Med Decis Making. 2001;21:82–3.

    PubMed  CAS  Google Scholar 

  108. Deaton A, Muellbauer J. Economics and consumer behavior. Cambridge, UK: Cambridge University Press; 1980.

    Google Scholar 

  109. Starmer C. Developments in non-expected utility theory: the hunt for a descriptive theory of choice under risk. J Econ Lit. 2000;38:332–82.

    Google Scholar 

  110. Van Houtven G, Johnson FR, Kilambi V, Hauber AB. Eliciting benefit-risk preferences and probability-weighted utility using choice-format conjoint analysis. Med Decis Mak. 2011;31:469–80.

    Google Scholar 

  111. Apter AJ, Paasche-Orlow MK, Remillard JT, et al. Numeracy and communication with patients: they are counting on us. J Gen Intern Med. 2008;23:2117–24.

    PubMed  Google Scholar 

  112. Fagerlin A, Ubel PA, Smith DM, Zikmund-Fisher BJ. Making numbers matter: present and future research in risk communication. Am J Health Behav. 2007;31(Suppl 1):S47–56.

    PubMed  Google Scholar 

  113. Elting LS, Martin CG, Cantor SB, Rubenstein EB. Influence of data display formats on physician investigators’ decisions to stop clinical trials: prospective trial with repeated measures. BMJ. 1999;318:1527–31.

    PubMed  CAS  Google Scholar 

  114. Reyna VF, Brainerd CJ. Numeracy, ratio bias, and denominator neglect in judgments of risk and probability. Learn Individ Differ. 2008;18:89–107.

    Google Scholar 

  115. Ancker JS, Senathirajah Y, Kukafka R, Starren JB. Design features of graphs in health risk communication: a systematic review. J Am Med Inform Assoc. 2006;13:608–18.

    PubMed  Google Scholar 

  116. Garcia-Retamero R, Galesic M. Communicating treatment risk reduction to people with low numeracy skills: a cross-cultural comparison. Am J Public Health. 2009;99:2196–202.

    PubMed  Google Scholar 

  117. Burkell J. What are the chances? Evaluating risk and benefit information in consumer health materials. J Med Libr Assoc. 2004;92:200–8.

    PubMed  Google Scholar 

  118. Brase GL. Which statistical formats facilitate what decisions? The perception and influence of different statistical information formats. J Behav Decis Mak. 2002;15:381–401.

    Google Scholar 

  119. Yamagishi K. When a 12.86% mortality is more dangerous then 24.14%: implications for risk communication. Appl Cogn Psychol. 1997;11:495–506.

    Google Scholar 

  120. Galesic M, Gigerenzer G, Straubinger N. Natural frequencies help older adults and people with low numeracy to evaluate medical screening tests. Med Decis Mak. 2009;29:368–71.

    Google Scholar 

  121. Cavanaugh K, Wallston KA, Gebretsadik T, et al. Addressing literacy and numeracy to improve diabetes care: two randomized controlled trials. Diabetes Care. 2009;32:2149–55.

    PubMed  Google Scholar 

  122. Fagerlin A, Wang C, Ubel PA. Reducing the influence of anecdotal reasoning on people’s health care decisions: is a picture worth a thousand statistics? Med Decis Mak. 2005;25:398–405.

    Google Scholar 

  123. Hawley ST, Zikmund-Fisher B, Ubel P, Jancovic A, Lucas T, Fagerlin A. The impact of the format of graphical presentation on health-related knowledge and treatment choices. Patient Educ Couns. 2008;73:448–55.

    PubMed  Google Scholar 

  124. Fagerlin A, Zikmund-Fisher BJ, Ubel PA, Jankovic A, Derry HA, Smith DM. Measuring numeracy without a math test: development of the Subjective Numeracy Scale. Med Decis Mak. 2007;27:672–80.

    Google Scholar 

  125. Woloshin S, Schwartz LM, Moncur M, Gabriel S, Tosteson AN. Assessing values for health: numeracy matters. Med Decis Mak. 2001;21:382–90.

    CAS  Google Scholar 

  126. Zikmund-Fisher BJ, Smith DM, Ubel PA, Fagerlin A. Validation of the Subjective Numeracy Scale: effects of low numeracy on comprehension of risk communications and utility elicitations. Med Decis Mak. 2007;27:663–71.

    Google Scholar 

  127. Johnson FR, Banzhaf MR, Desvousges WH. Willingness to pay for improved respiratory and cardiovascular health: a multiple-format, stated-preference approach. Health Econ. 2000;9:295–317.

    PubMed  CAS  Google Scholar 

  128. Phillips KA, Maddala T, Johnson FR. Measuring preferences for health care interventions using conjoint analysis: an application to HIV testing. Health Serv Res. 2002;37:1681–705.

    PubMed  Google Scholar 

  129. Ryan M, Hughes J. Using conjoint analysis to assess women’s preferences for miscarriage management. Health Econ. 1997;6:261–73.

    PubMed  CAS  Google Scholar 

  130. Hauber AB, Johnson FR, Grotzinger KM, Ozdemir S. Patients’ benefit-risk preferences for chronic idiopathic thrombocytopenic purpura therapies. Ann Pharmacother. 2010;44:479–88.

    PubMed  Google Scholar 

  131. Johnson FR, Van Houtven G, Ozdemir S, et al. Multiple sclerosis patients’ benefit-risk preferences: serious adverse event risks versus treatment efficacy. J Neurol. 2009;256:554–62.

    PubMed  Google Scholar 

  132. Johnson FR, Ozdemir S, Hauber B, Kauf TL. Women’s willingness to accept perceived risks for vasomotor symptom relief. J Womens Health (Larchmt). 2007;16:1028–40.

    Google Scholar 

  133. Johnson FR, Manjunath R, Mansfield CA, Clayton LJ, Hoerger TJ, Zhang P. High-risk individuals’ willingness to pay for diabetes risk-reduction programs. Diabetes Care. 2006;29:1351–6.

    PubMed  Google Scholar 

  134. Lichtenstein G, Waters H, Kelly J, et al. Assessing drug treatment preferences of patients with Crohn’s disease, a conjoint analysis. Patient. 2010;3:113–23.

    Google Scholar 

  135. Johnson FR, Ozdemir S, Mansfield C, et al. Crohn’s disease patients’ risk-benefit preferences: serious adverse event risks versus treatment efficacy. Gastroenterology. 2007;133:769–79.

    PubMed  Google Scholar 

  136. Johnson FR, Ozdemir S, Mansfield C, Hass S, Siegel CA, Sands BE. Are adult patients more tolerant of treatment risks than parents of juvenile patients? Risk Anal. 2009;29:121–36.

    PubMed  Google Scholar 

  137. Johnson FR, Hauber B, Ozdemir S, Siegel CA, Hass S, Sands BE. Are gastroenterologists less tolerant of treatment risks than patients? Benefit-risk preferences in Crohn’s disease management. J Manag Care Pharm. 2010;16:616–28.

    PubMed  Google Scholar 

  138. Hodgkins P, Swinburn P, Solomon D, Yen L, Dewilde S, Lloyd A. Patient preferences for first-line oral treatment for mild-to-moderate ulcerative colitis: a discrete-choice experiment. Patient. 2012;5:33–44.

    PubMed  Google Scholar 

  139. Bridges JF, Hauber AB, Marshall D, et al. Conjoint analysis applications in health—a checklist: a report of the ISPOR Good Research Practices for Conjoint Analysis Task Force. Value Health. 2011;14:403–13.

    PubMed  Google Scholar 

  140. Johnson F, Lancsar E, Marshall D, et al. Constructing experimental designs for discrete-choice experiments: report of the ISPOR Conjoint Analysis Experimental Design Good Research Practices Task Force. Value Health. 2013;16:3–13.

    Google Scholar 

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Acknowledgments

Funding for this study came, in part, from NIH K08 DK084347-01.

Meenakshi Bewtra conducted the literature search and summarized the findings. Meenakshi Bewtra and F. Reed Johnson interpreted the findings and developed the manuscript.

Meenakshi Bewtra has received a research grant from Centocor. F. Reed Johnson declares no conflicts of interest.

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Authors and Affiliations

  1. Department of Gastroenterology, University of Pennsylvania, 423 Guardian Drive, 724 Blockley Hall, Philadelphia, PA, 19104-6021, USA

    Meenakshi Bewtra

  2. Center for Clinical Epidemiology and Biostatistics, University of Pennsylvania, Philadelphia, PA, USA

    Meenakshi Bewtra

  3. RTI-HS, Research Triangle Institute, Research Triangle Park, NC, USA

    F. Reed Johnson

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  1. Meenakshi Bewtra
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  2. F. Reed Johnson
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Correspondence to Meenakshi Bewtra.

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Bewtra, M., Johnson, F.R. Assessing Patient Preferences for Treatment Options and Process of Care in Inflammatory Bowel Disease: A Critical Review of Quantitative Data. Patient 6, 241–255 (2013). https://doi.org/10.1007/s40271-013-0031-2

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