Making therapeutic decisions in inflammatory bowel disease: The role of patients

Current Opinion in Gastroenterology

Volumn 25, Issue 4, 2009, Pages 334-338

  Siegel, Corey A ^a  

^a DARTMOUTH HITCHCOCK MEDICAL CENTER   (United States)

Author keywords

Communication; Inflammatory bowel disease; Preference; Risk; Shared decision making

Indexed keywords

5 ACETAMIDOSALICYLIC ACID; ADALIMUMAB; AZATHIOPRINE; CERTOLIZUMAB PEGOL; CYCLOSPORIN; INFLIXIMAB; MESALAZINE; NATALIZUMAB; TUMOR NECROSIS FACTOR ANTIBODY;

CHILD; CLINICAL TRIAL; COLON CROHN DISEASE; COLON RESECTION; CROHN DISEASE; DECISION MAKING; DISEASE ASSOCIATION; ENTERITIS; HIGH RISK PATIENT; HUMAN; ILEOSTOMY; ILEUM DISEASE; INFECTION RISK; INTERPERSONAL COMMUNICATION; MEDICAL DECISION MAKING; MEDICAL INFORMATION; MONOTHERAPY; PRESCRIPTION; QUALITY OF LIFE; REVIEW; RISK ASSESSMENT; RISK BENEFIT ANALYSIS; TREATMENT RESPONSE; ULCERATIVE COLITIS;

ANTI-BACTERIAL AGENTS; COLECTOMY; DECISION MAKING; FEMALE; GASTROINTESTINAL AGENTS; HUMANS; IMMUNOSUPPRESSIVE AGENTS; INFLAMMATORY BOWEL DISEASES; MALE; PATIENT ACCEPTANCE OF HEALTH CARE; PATIENT PARTICIPATION; PATIENT SATISFACTION; PATIENT SELECTION; PHYSICIAN-PATIENT RELATIONS; PROGNOSIS; RISK ASSESSMENT; SEVERITY OF ILLNESS INDEX; TREATMENT OUTCOME;

EID: 68049103248     PISSN: 02671379     EISSN: None     Source Type: Journal    
DOI: 10.1097/MOG.0b013e32832b764b     Document Type: Review

References (36)

1. D'Haens G, Baert F, van Assche G, et al. Early combined immunosuppression or conventional management in patients with newly diagnosed Crohn's disease: an open randomised trial. Lancet 2008; 371:660-667. A randomized trial showing that infliximab together with azathioprine soon after diagnosis leads to better outcomes than the standard 'step-up' approach. An important question is whether patients will agree to this more aggressive treatment algorithm.
2. Sandborn W, Rutgeerts P, Reinisch W, et al. SONIC: A randomized, doubleblind, controlled trial comparing infliximab and infliximab plus azathioprine to azathioprine in patients with Crohn's disease naive to immunomodulators and biologic therapy. Am J Gastroenterol 2008; 103. Patients responded better to the combination of infliximab plus azathioprine versus either drug when used on its own. It is not clear if patients will agree that the additional risks associated with using two immune suppressant drugs together is worth the incremental chance of treatment benefit.
3. Markowitz J, Grancher K, Kohn N, et al. A multicenter trial of 6-mercaptopurine and prednisone in children with newly diagnosed Crohn's disease. Gastroenterology 2000; 119:895-902. (Pubitemid 30777909)
4. Punati J, Markowitz J, Lerer T, et al. Effect of early immunomodulator use in moderate to severe pediatric Crohn disease. Inflamm Bowel Dis 2008; 14:949-954.
5. Brundage MD, Feldman-Stewart D, Cosby R, et al. Phase I study of a decision aid for patients with locally advanced nonsmall-cell lung cancer. J Clin Oncol 2001; 19:1326-1335. (Pubitemid 32202537)
6. Dales RE, O'Connor A, Hebert P, et al. Intubation and mechanical ventilation for COPD: development of an instrument to elicit patient preferences. Chest 1999; 116:792-800. (Pubitemid 29428501)
7. Man-Son-Hing M, Laupacis A, O'Connor AM, et al. A patient decision aid regarding antithrombotic therapy for stroke prevention in atrial fibrillation: a randomized controlled trial. JAMA 1999; 282:737-743. (Pubitemid 29404379)
8. Stacey D, O'Connor AM, DeGrasse C, Verma S. Development and evaluation of a breast cancer prevention decision aid for higher-risk women. Health Expect 2003; 6:3-18. (Pubitemid 36460039)
9. Adam JA, Khaw FM, Thomson RG, et al. Patient decision aids in joint replacement surgery: a literature review and an opinion survey of consultant orthopaedic surgeons. Ann R Coll Surg Engl 2008; 90:198-207.
10. O'Connor AM, Wennberg JE, Legare F, et al. Toward the 'tipping point': decision aids and informed patient choice. Health Aff (Millwood) 2007; 26:716-725.
11. Slovic P. Perception of risk. Science 1987; 236:280-285. (Pubitemid 17242905)
12. Rosh JR, Gross T, Mamula P, et al. Hepatosplenic T-cell lymphoma in adolescents and young adults with Crohn's disease: a cautionary tale? Inflamm Bowel Dis 2007; 13:1024-1030.
13. Van Assche G, Van Ranst M, Sciot R, et al. Progressive multifocal leukoencephalopathy after natalizumab therapy for Crohn's disease. N Engl J Med 2005; 353:362-368. (Pubitemid 41132340)
14. Johnson FR, Ozdemir S, Mansfield C, et al. Crohn's disease patients' riskbenefit preferences: serious adverse event risks versus treatment efficacy. Gastroenterology 2007; 133:769-779. (Pubitemid 47374126)
15. Johnson FR, Ozdemir S, Mansfield C, et al. Are adult patients more tolerant of treatment risks than parents of juvenile patients? Risk Anal 2009; 29:121-136. The risk tolerance of parents of children with Crohn's disease was measured and compared to that of adult patients. Parents were willing to accept even higher treatment related risks, but only if their children were fairly sick.
16. Kennedy ED, To T, Steinhart AH, et al. Do patients consider postoperative maintenance therapy for Crohn's disease worthwhile? Inflamm Bowel Dis 2008; 14:224-235.
17. 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; 4:1135-1142.
18. Rutgeerts P, Sandborn WJ, Feagan BG, et al. Infliximab for induction and maintenance therapy for ulcerative colitis. N Engl J Med 2005; 353:2462-2476. (Pubitemid 41770166)
19. Degner LF, Kristjanson LJ, Bowman D, et al. Information needs and decisional preferences in women with breast cancer. JAMA 1997; 277:1485-1492. (Pubitemid 27208893)
20. Levinson W, Kao A, Kuby A, Thisted RA. Not all patients want to participate in decision making. A national study of public preferences. J Gen Intern Med 2005; 20:531-535. (Pubitemid 41003809)
21. 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. Patients overestimate the response rate to infliximab, and underestimate the frequency of treatment related side effects.
22. Hanauer SB, Feagan BG, Lichtenstein GR, et al. Maintenance infliximab for Crohn's disease: the ACCENT I randomised trial. Lancet 2002; 359:1541-1549. (Pubitemid 34621118)
23. Baars JE, Siegel CA, Kuipers EJ, Van der Woude CJ. Patient's perspectives important for early antitumor necrosis factor treatment in inflammatory bowel disease. Digestion 2009; 79:30-35.
24. O'Connor A, Jacobsen M. Workbook on developing and evaluating patient decision aids. http://decisionaid.ohri.ca/docs/Resources/Develop-DA.pdf. [Accessed 17 July 2006]
25. Davison BJ, Degner LF. Empowerment of men newly diagnosed with prostate cancer. Cancer Nurs 1997; 20:187-196. (Pubitemid 27247287)
26. Bernstein SJ, Skarupski KA, Grayson CE, et al. A randomized controlled trial of information-giving to patients referred for coronary angiography: effects on outcomes of care. Health Expect 1998; 1:50-61.
27. Hess C. Should I have surgery to cure ulcerative colitis? http://wwwwebmdcom/ hw/inflammatory-bowel/uf4785-wisedecisionasp. [Accessed 10 September 2006]
28. O'Connor AM, Stacey D, Entwistle V, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev 2006.
29. Schwartz LM, Woloshin S, Welch HG, Communicating drug benefits and harms with a drug facts box: two randomized trials. Ann Intern Med 2009 [Epub ahead of print]. The results of this study show the effectiveness of the drug facts box for clearly communicating medical data to patients.
30. 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-S56.
31. Peters E, Hibbard J, Slovic P, Dieckmann N. Numeracy skill and the communication, comprehension, and use of risk-benefit information. Health Aff (Millwood) 2007; 26:741-748.
32. Malenka DJ, Baron JA, Johansen S, et al. The framing effect of relative and absolute risk. J Gen Intern Med 1993; 8:543-548. (Pubitemid 23312931)
33. Covey J. A meta-analysis of the effects of presenting treatment benefits in different formats. Med Decis Making 2007; 27:638-654. (Pubitemid 47547599)
34. Schwartz LM, Woloshin S, Black WC, Welch HG. The role of numeracy in understanding the benefit of screening mammography. Ann Intern Med 1997; 127:966-972. (Pubitemid 27516607)
35. Lipkus IM. Numeric, verbal, and visual formats of conveying health risks: suggested best practices and future recommendations. Med Decis Making 2007; 27:696-713.
36. Siegel CA, Siegel LS, Hyams J, et al. A prediction tool to help children with Crohn's disease and their parents understand individualized risks of disease complications and response to therapy. Gastroenterology 2009: Digestive Disease Week, Chicago, IL.