One of the patterns in the ibd discourse by respondents was to refer to lower half of the body as

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1. Rocchi A, Benchimol EI, Bernstein CN, Bitton A, Feagan B, Panaccione R, et al. Inflammatory bowel disease: a Canadian burden of illness review. Canadian Journal of Gastroenterology and Hepatology. 2012;26(11):811–817. [PMC free article] [PubMed] [Google Scholar]

2. Lesnovska KP, Börjeson S, Hjortswang H, Frisman GH. What do patients need to know? Living with inflammatory bowel disease. J Clin Nurs. 2014;23(11–12):1718–1725. [PubMed] [Google Scholar]

3. Molodecky NA, Soon S, Rabi DM, Ghali WA, Ferris M, Chernoff G, et al. Increasing incidence and prevalence of the inflammatory bowel diseases with time, based on systematic review. Gastroenterology. 2012;142(1):46–54. [PubMed] [Google Scholar]

4. Benchimol EI, Bernstein CN, Bitton A, Carroll MW, Singh H, Otley AR, et al. Trends in epidemiology of pediatric inflammatory bowel disease in Canada: distributed network analysis of multiple population-based provincial health administrative databases. Am J Gastroenterol. 2017;112(7):1120–1134. [PMC free article] [PubMed] [Google Scholar]

5. Fedorak R, Wong K, Bridges R. Inflammatory bowel disease in Canada: incidence, prevalence, and direct and indirect economic impact. Canadian Journal of Gastroenterology and Hepatology. 2010;24(11):651–655. [PMC free article] [PubMed] [Google Scholar]

6. Germino JC, Elmore JG, Carlos RC, Lee CI. Imaging-based screening: maximizing benefits and minimizing harms. Clin Imaging. 2016;40(2):339–343. [PMC free article] [PubMed] [Google Scholar]

7. Cammilletti V, Forino F, Palombi M, Donati D, Tartaglini D, Di Muzio M. BRASS score and complex discharge: a pilot study. Acta Bio Medica. 2017;88(4):414–425. [PMC free article] [PubMed] [Google Scholar]

8. Panés J, Ricart E. Can we monitor a patient with inflammatory bowel disease and adapt treatment without endoscopy? Curr Drug Targets. 2016;19(7):777–781. [PubMed] [Google Scholar]

9. Østbye T, Yarnall KS, Krause KM, Pollak KI, Gradison M, Michener JL. Is there time for management of patients with chronic diseases in primary care? The Annals of Family Medicine. 2005;3(3):209–214. [PMC free article] [PubMed] [Google Scholar]

10. Chiarini M, Di Simone E, Scafuro C, Auddino F, Fabbri M, Delli Poggi A, et al. Health self-perception in patient with Crohn's disease: a web survey. La Clinica terapeutica. 2017;168(6):e401–e405. [PubMed] [Google Scholar]

11. Sagar K. Medical imaging: does it help? In: Brown CL, James JT, editors. The truth about big medicine: righting the wrongs for better health care. Lanham, MD: Rowman & Littlefield Publishers; 2014. pp. 163–168. [Google Scholar]

12. Reyna VF, Nelson WL, Han PK, Pignone MP. Decision making and cancer. Am Psychol. 2015;70(2):105. [PMC free article] [PubMed] [Google Scholar]

13. Bernstein CN, Fried M, Krabshuis JH, Cohen H, Eliakim R, Fedail S, et al. World gastroenterology organization practice guidelines for the diagnosis and management of IBD in 2010. Inflamm Bowel Dis. 2010;16(1):112–124. [PubMed] [Google Scholar]

14. Kilcoyne A, Kaplan JL, Gee MS. Inflammatory bowel disease imaging: current practice and future directions. World J Gastroenterol. 2016;22(3):917. [PMC free article] [PubMed] [Google Scholar]

15. Glasziou P, Irwig L, Mant D. Monitoring in chronic disease: a rational approach. Br Med J. 2005;330(7492):644. [PMC free article] [PubMed] [Google Scholar]

16. Cappello M, Morreale GC. The role of laboratory tests in Crohn’s disease. Clinical Medicine Insights Gastroenterology. 2016;9:51. [PMC free article] [PubMed] [Google Scholar]

17. Heida A, Dijkstra A, Dantuma SK, van Rheenen PF. A cross-sectional study on the perceptions and practices of teenagers with inflammatory bowel disease about repeated stool sampling. J Adolesc Health. 2016;59(4):479–481. [PubMed] [Google Scholar]

18. Cabrera-Abreu J, Davies P, Matek Z, Murphy M. Performance of blood tests in diagnosis of inflammatory bowel disease in a specialist clinic. Arch Dis Child. 2004;89(1):69–71. [PMC free article] [PubMed] [Google Scholar]

19. Zakeri N, Pollok RC. Diagnostic imaging and radiation exposure in inflammatory bowel disease. World J Gastroenterol. 2016;22(7):2165. [PMC free article] [PubMed] [Google Scholar]

20. Denters MJ, Schreuder M, Depla AC, Mallant-Hent RC, van Kouwen MC, Deutekom M, et al. Patients’ perception of colonoscopy: patients with inflammatory bowel disease and irritable bowel syndrome experience the largest burden. Eur J Gastroenterol Hepatol. 2013;25(8):964–972. [PubMed] [Google Scholar]

21. Foell D, Wittkowski H, Roth J. Monitoring disease activity by stool analyses: from occult blood to molecular markers of intestinal inflammation and damage. Gut. 2009;58(6):859–868. [PubMed] [Google Scholar]

22. Chang S, Malter L, Hudesman D. Disease monitoring in inflammatory bowel disease. World J Gastroenterol. 2015;21(40):11246. [PMC free article] [PubMed] [Google Scholar]

23. Mosli MH, Zou G, Garg SK, Feagan SG, MacDonald JK, Chande N, et al. C-reactive protein, fecal calprotectin, and stool lactoferrin for detection of endoscopic activity in symptomatic inflammatory bowel disease patients: a systematic review and meta-analysis. Am J Gastroenterol. 2015;110(6):802. [PubMed] [Google Scholar]

24. Moran CP, Neary B, Doherty GA. Endoscopic evaluation in diagnosis and management of inflammatory bowel disease. World Journal of Gastrointestinal Endoscopy. 2016;8(20):723. [PMC free article] [PubMed] [Google Scholar]

25. Mooiweer E, Van Der Meulen-de Jong A, Ponsioen C, Fidder H, Siersema P, Dekker E, et al. Chromoendoscopy for surveillance in inflammatory bowel disease does not increase neoplasia detection compared with conventional colonoscopy with random biopsies: results from a large retrospective study. Am J Gastroenterol. 2015;110(7):1014. [PubMed] [Google Scholar]

26. Ananthakrishnan AN, Cagan A, Cai T, Gainer VS, Shaw SY, Churchill S, et al. Colonoscopy is associated with a reduced risk for colon cancer and mortality in patients with inflammatory bowel diseases. Clin Gastroenterol Hepatol. 2015;13(2):322–329. [PMC free article] [PubMed] [Google Scholar]

27. Haas K, Rubesova E, Bass D. Role of imaging in the evaluation of inflammatory bowel disease: how much is too much? World Journal of Radiology. 2016;8(2):124. [PMC free article] [PubMed] [Google Scholar]

28. McMurtry CM, Taddio A, Noel M, Antony MM, Chambers CT, Asmundson GJ, et al. Exposure-based interventions for the management of individuals with high levels of needle fear across the lifespan: a clinical practice guideline and call for further research. Cogn Behav Ther. 2016;45(3):217–235. [PMC free article] [PubMed] [Google Scholar]

29. Voiosu A, Tantau A, Garbulet C. Factors affecting colonoscopy comfort and compliance: a questionnaire based multicenter study. Rom J Intern Med. 2014;52(3):151–157. [PubMed] [Google Scholar]

30. Trost Z, Jones A, Guck A, Vervoort T, Kowalsky J, France C. Initial validation of a virtual blood draw exposure paradigm for fear of blood and needles. Journal of Anxiety Disorders. 2017;51:65–71. [PubMed] [Google Scholar]

31. McMurtry CM, Riddell RP, Taddio A, Racine N, Asmundson GJ, Noel M, et al. Far from “just a poke”: common painful needle procedures and the development of needle fear. Clin J Pain. 2015;31(Suppl 10):S3. [PMC free article] [PubMed] [Google Scholar]

32. Thompson C, Charlson M, Schenkein E, Wells M, Furman R, Elstrom R, et al. Surveillance CT scans are a source of anxiety and fear of recurrence in long-term lymphoma survivors. Ann Oncol. 2010;21(11):2262–2266. [PMC free article] [PubMed] [Google Scholar]

33. King-Marshall EC, Mueller N, Dailey A, Barnett TE, George TJ, Sultan S, et al. “It is just another test they want to do”: patient and caregiver understanding of the colonoscopy procedure. Patient Educ Couns. 2016;99(4):651–658. [PubMed] [Google Scholar]

34. Munn Z, Jordan Z. The patient experience of high technology medical imaging: a systematic review of the qualitative evidence. Radiography. 2011;17(4):323–331. [PubMed] [Google Scholar]

35. Becker HM, Grigat D, Ghosh S, Kaplan GG, Dieleman L, Wine E, et al. Living with inflammatory bowel disease: a Crohn’s and colitis Canada survey. Canadian Journal of Gastroenterology and Hepatology. 2015;29(2):77–84. [PMC free article] [PubMed] [Google Scholar]

36. Zhang M, Hong L, Zhang T, Lin Y, Zheng S, Zhou X, et al. Illness perceptions and stress: mediators between disease severity and psychological well-being and quality of life among patients with Crohn’s disease. Patient Preference and Adherence. 2016;10:2387. [PMC free article] [PubMed] [Google Scholar]

37. Lönnfors S, Vermeire S, Avedano L. IBD and health-related quality of life—discovering the true impact. J Crohn's Colitis. 2014;8(10):1281–1286. [PubMed] [Google Scholar]

38. 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(2):590–598. [PubMed] [Google Scholar]

39. van Erp S, Brakenhoff L, Vollmann M, van der Heijde D, Veenendaal R, Fidder H, et al. Illness perceptions and outcomes in patients with inflammatory bowel disease: is coping a mediator? International Journal of Behavioral Medicine. 2017;24(2):205–214. [PubMed] [Google Scholar]

40. Siegel CA, Lofland JH, Naim A, Gollins J, Walls DM, Rudder LE, et al. Novel statistical approach to determine inflammatory bowel disease: patients’ perspectives on shared decision making. The Patient-Patient-Centered Outcomes Research. 2016;9(1):79–89. [PubMed] [Google Scholar]

41. Sultan S, Partin MR, Shah P, LeLaurin J, Freytes IM, Nightingale CL, et al. Barriers and facilitators associated with colonoscopy completion in individuals with multiple chronic conditions: a qualitative study. Patient Preference and Adherence. 2017;11:985. [PMC free article] [PubMed] [Google Scholar]

42. Di Muzio M, Marinucci A, De Benedictis A, Tartaglini D. A comparative study of data collection methods in the process of nursing: detection of chemotherapy side effects using a self-reporting questionnaire. Acta Clinica Croatica. 2017;56(4):765–772. [PubMed] [Google Scholar]

43. Jelsness-Jørgensen L-P, Moum B, Bernklev T. Worries and concerns among inflammatory bowel disease patients followed prospectively over one year. Gastroenterol Res Pract. 2011;2011:1–8. [PMC free article] [PubMed] [Google Scholar]

44. Parker MJ, Manan A, Urbanski S. Prospective evaluation of direct approach with a tablet device as a strategy to enhance survey study participant response rate. BMC Research Notes. 2012;5(1):605–611. [PMC free article] [PubMed] [Google Scholar]

45. Loren AW, Brazauskas R, Chow EJ, Gilleece M, Halter J, Jacobsohn DA, et al. Physician perceptions and practice patterns regarding fertility preservation in hematopoietic cell transplant recipients. Bone Marrow Transplant. 2013;48(8):1091–1097. [PMC free article] [PubMed] [Google Scholar]

46. Miller DC. Handbook of research design and social measurement. 5. Newbury Park, CA: SAGE Publications; 1991. [Google Scholar]

47. Cooper DR, Emory W. Business research methods. 5. Chicago: Irwin; 1995. [Google Scholar]

48. Veilleux S, Noiseux I, Lachapelle N, Kohen R, Vachon L, Guay BW, et al. Patients’ perception of their involvement in shared treatment decision making: key factors in the treatment of inflammatory bowel disease. Patient Educ Couns. 2017;101(2):331–339. [PubMed] [Google Scholar]

49. Amara N, Blouin-Bougie J, Bouthillier D, Simard J. On the readiness of physicians for pharmacogenomics testing: an empirical assessment. The Pharmacogenomics Journal. 2017;18(2):308–318. [PubMed] [Google Scholar]

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Sociodemographic profil of the entire population under study (n = 210)