Patient perspectives on the impact of Crohn's disease: Results from group interviews

Patient Preference and Adherence

Volumn 6, Issue , 2012, Pages 509-519

  Norton, Beth Ann ^a   Thomas, Rosemarie ^b   Lomax, Kathleen G ^b   Dudley Brown, Sharon ^c  

^a MASSACHUSETTS GENERAL HOSPITAL   (United States)

^b ABBOTT LABORATORIES   (United States)

^c JOHNS HOPKINS UNIVERSITY   (United States)

Author keywords

Crohn's disease; Patient perspective; Quality of life

Indexed keywords

ADALIMUMAB; CERTOLIZUMAB PEGOL; INFLIXIMAB; TUMOR NECROSIS FACTOR INHIBITOR;

ADULT; AGED; ARTICLE; BIOLOGICAL THERAPY; BOTHERSOMENESS; CHOICE OF CLOTHING; CLINICAL ARTICLE; COHORT ANALYSIS; CONTROLLED STUDY; COPING BEHAVIOR; CROHN DISEASE; DAILY LIFE ACTIVITY; DECISION MAKING; DIARRHEA; DIET; DISEASE SEVERITY; EMBARRASSMENT; EMOTION; FATIGUE; FEAR; FEMALE; HEALTH CARE PERSONNEL; HEALTH CARE QUALITY; HEALTH IMPACT ASSESSMENT; HUMAN; HUMAN RELATION; IMMUNE SYSTEM; INTERVIEW; INTESTINAL DYSMOTILITY; MALE; MEDICAL DECISION MAKING; MEDICAL INFORMATION; MEDICAL SPECIALIST; PATIENT COMPLIANCE; PATIENT EDUCATION; PATIENT SATISFACTION; PHYSICAL CAPACITY; PROFESSIONALISM; PSYCHOLOGICAL ASPECT; QUALITATIVE ANALYSIS; REMISSION; SELF REPORT; SEX DIFFERENCE; SOCIAL INTERACTION; STRESS; SYMPTOMATOLOGY; TREATMENT DURATION; TREATMENT RESPONSE;

EID: 84886079353     PISSN: None     EISSN: 1177889X     Source Type: Journal    
DOI: 10.2147/PPA.S32690     Document Type: Article

References (48)

1. Kappelman MD, Rifas-Shiman SL, Kleinman K, et al. The prevalence and geographic distribution of Crohn's disease and ulcerative colitis in the United States. Clin Gastroenterol Hepatol. 2007;5(12):1424-1429.
2. Loftus EV Jr, Schoenfeld P, Sandborn WJ. The epidemiology and natural history of Crohn's disease in population-based patient cohorts from North America: a systematic review. Aliment Pharmacol Ther. 2002;16(1):51-60.
3. Loftus CG, Loftus EV Jr, Harmsen WS, et al. Update on the incidence and prevalence of Crohn's disease and ulcerative colitis in Olmsted County, Minnesota, 1940-2000. Inflamm Bowel Dis. 2007;13(3):254-261.
4. Pieper C, Haag S, Gesenhues S, Holtmann G, Gerken G, Jockel KH. Guideline adherence and patient satisfaction in the treatment of inflammatory bowel disorders-an evaluation study. BMC Health Serv Res. 2009;9:17.
5. Ghosh S, Mitchell R. Impact of inflammatory bowel disease on quality of life: Results of the European Federation of Crohn's and Ulcerative Colitis Associations (EFCCA) patient survey. J Crohns Colitis. 2007;1(1):10-20.
6. Dignass A, Van Assche G, Lindsay JO, et al. The second European evidence-based consensus on the diagnosis and management of Crohn's disease: current management. J Crohns Colitis. 2010;4(1):28-62.
7. Lichtenstein GR, Hanauer SB, Sandborn WJ. Management of Crohn's disease in adults [quiz 464 and 484]. Am J Gastroenterol. 2009;104(2):465-483.
8. Oldenburg B, Hommes D. Biological therapies in inflammatory bowel disease: top-down or bottom-up? Curr Opin Gastroenterol. 2007;23(4):395-399.
9. Hanauer SB. Clinical perspectives in Crohn's disease. Turning traditional treatment strategies on their heads: current evidence for "step-up" versus "top-down. " Rev Gastroenterol Disord. 2007;7(Suppl 2):S17-S22.
10. Colombel JF, Sandborn WJ, Reinisch W, et al. Infliximab, azathioprine, or combination therapy for Crohn's disease. New Engl J Med. 2010;362(15):1383-1395.
11. Hanauer SB, Sandborn WJ, Rutgeerts P, et al. Human anti-tumor necrosis factor monoclonal antibody (adalimumab) in Crohn's disease: the CLASSIC-I trial. Gastroenterology. 2006;130(2):323-333.
12. Hanauer SB, Feagan BG, Lichtenstein GR, et al. Maintenance infliximab for Crohn's disease: the ACCENT I randomised trial. Lancet. 2002;359(9317):1541-1549.
13. 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(1):52-65.
14. Targan SR, Hanauer SB, van Deventer SJH, et al. A short-term study of chimeric monoclonal antibody cA2 to tumor necrosis factor-alpha for Crohn's disease. Crohn's Disease cA2 Study Group. New Engl J Med. 1997;337(15):1029-1035.
15. 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(12):829-838.
16. Sandborn WJ, Feagan BG, Stoinov S, et al. Certolizumab pegol for the treatment of Crohn's disease. New Engl J Med. 2007;357(3): 228-238.
17. Schreiber S, Khaliq-Kareemi M, Lawrance IC, et al. Maintenance therapy with certolizumab pegol for Crohn's disease. New Engl J Med. 2007;357(3):239-250.
18. Irving EJ. Review article: patients' fears and unmet needs in inflammatory bowel disease. Aliment Pharmacol Ther. 2004;20(Suppl 4):S54-S59.
19. Mitchell R, Kremer A, Westwood N, Younge L, Ghosh S. Talking about life and IBD: a paradigm for improving patient-physician communication. J Crohns Colitis. 2009;3(1):1-3.
20. Siegel CA. Making therapeutic decisions in inflammatory bowel disease: the role of patients. Curr Opin Gastroenterol. 2009;25(4):334-338.
21. Nightingale AJ, Middleton W, Middleton SJ, Hunter JO. Evaluation of the effectiveness of a specialist nurse in the management of inflammatory bowel disease (IBD). Eur J Gastroenterol Hepatol. 2000;12(9):967-973.
22. Westwood N, Travis SP. Review article: what do patients with inflammatory bowel disease want for their clinical management? Aliment Pharmacol Ther. 2008;27(Suppl 1):S1-S8.
23. Whittemore R, Dixon J. Chronic illness: the process of integration. J Clin Nurs. 2008;17(7B):177-187.
24. Casati J, Toner BB, de Rooy EC, Drossman DA, Maunder RG. Concerns of patients with inflammatory bowel disease: a review of emerging themes. Dig Dis Sci. 2000;45(1):26-31.
25. Stjernman H, Tysk C, Almer S, Strom M, Hjortswang H. Worries and concerns in a large unselected cohort of patients with Crohn's disease. Scand J Gastroenterol. 2010;45(6):696-706.
26. Taft TH, Keefer L, Leonhard C, Nealon-Woods M. Impact of perceived stigma on inflammatory bowel disease patient outcomes. Inflamm Bowel Dis. 2009;15(8):1224-1232.
27. Baars JE, Markus T, Kuipers EJ, van der Woude CJ. Patients' preferences regarding shared decision-making in the treatment of inflammatory bowel disease: results from a patient-empowerment study. Digestion. 2010;81(2):113-119.
28. Magro F, Portela F, Lago P, et al. Inflammatory bowel disease: a patient's and caregiver's perspective. Dig Dis Sci. 2009;54(12):2671-2679.
29. Zutshi M, Hull TL, Hammel J. Crohn's disease: a patient's perspective. Int J Colorectal Dis. 2007;22(12):1437-1444.
30. 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(3):769-779.
31. 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(8):616-628.
32. Baars JE, Siegel CA, Kuipers EJ, van der Woude CJ. Patient's perspectives important for early anti-tumor necrosis factor treatment in inflammatory bowel disease. Digestion. 2009;79(1):30-35.
33. 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):1-6.
34. Cooper JM, Collier J, James V, Hawkey CJ. Beliefs about personal control and self-management in 30-40 year olds living with Inflammatory Bowel Disease: a qualitative study. Int J Nurs Stud. 2010;47(12):1500-1509.
35. Belling R, Woods L, McLaren S. Stakeholder perceptions of specialist Inflammatory Bowel Disease nurses' role and personal attributes. Int J Nurs Pract. 2008;14(1):67-73.
36. Aigner MJ, Drew S, Phipps J. A comparative study of nursing home resident outcomes between care provided by nurse practitioners/physicians versus physicians only. J Am Med Dir Assoc. 2004;5(1): 16-23.
37. Lambing AY, Adams DL, Fox DH, Divine G. Nurse practitioners' and physicians' care activities and clinical outcomes with an inpatient geriatric population. J Am Acad Nurse Pract. 2004;16(8):343-352.
38. Hekkink CF, Wigersma L, Yzermans CJ, Bindels PJ. HIV nursing consultants: patients' preferences and experiences about the quality of care. J Clin Nurs. 2005;14(3):327-333.
39. Wilson IB, Landon BE, Hirschhorn LR, et al. Quality of HIV care provided by nurse practitioners, physician assistants, and physicians. Ann Intern Med. 2005;143(10):729-736.
40. Ohman-Strickland PA, Orzano AJ, Hudson SV, et al. Quality of diabetes care in family medicine practices: influence of nurse-practitioners and physician's assistants. Ann Fam Med. 2008;6(1):14-22.
41. Holbrook K. A triangulation study of the clinician and patient experiences of the use of the immunosuppressant drugs azathioprine and 6-mercaptopurine for the management of inflammatory bowel disease. J Clin Nurs. 2007;16(8):1427-1434.
42. Stansfield C, Robinson A. Implementation of an IBD nurse-led self-management programme. Gastrointestinal Nursing. 2008;6(3): 12-18.
43. Garrick V, Atwal P, Barclay AR, McGrogan P, Russell RK. Successful implementation of a nurse-led teaching programme to independently administer subcutaneous methotrexate in the community setting to children with Crohn's disease. Aliment Pharmacol Ther. 2009;29(1):90-96.
44. Schreiber S, Hamling J, Wedel S, Nikolaus SN, Buhr HJ, Raedler A. Efficacy of patient education in chronic inflammatory bowel disease in a prospective controlled multicentre trial. Gastroenterology. 1999; 116:A815.
45. Pearson C. Establishing an inflammatory bowel disease service. Nurs Times. 2006;102(23):28-29.
46. Miller L, Caton S, Lynch D. Telephone clinic improves quality of follow-up care for chronic bowel disease. Nurs Times. 2002;98(31): 36-38.
47. Younge L, Norton C. Contribution of specialist nurses in managing patients with IBD. Br J Nurs. 2007;16(4):208-212.
48. Coughlin M. Improving patient outlook in rheumatoid arthritis: experience with abatacept. J Am Acad Nurse Pract. 2008;20(10):486-495.