Self-reported symptom burden in individuals with inflammatory bowel disease

Journal of Crohn's and Colitis

Volumn 10, Issue 3, 2016, Pages 315-322

  Farrell, Dawn ^a   McCarthy, Geraldine ^a   Savage, Eileen ^a  

^a UNIVERSITY COLLEGE CORK   (Ireland)

Author keywords

Inflammatory bowel disease; Symptom burden; Symptoms

Indexed keywords

ADULT; ARTICLE; DIARRHEA; DISEASE SEVERITY; DISTRESS SYNDROME; FECES INCONTINENCE; FEMALE; FLATULENCE; HUMAN; INFLAMMATORY BOWEL DISEASE; IRRITABLE COLON; MAJOR CLINICAL STUDY; MALE; MEMORIAL SYMPTOM ASSESSMENT SCALE; PREVALENCE; PRIORITY JOURNAL; RATING SCALE; SELF REPORT; SYMPTOM; SYMPTOM BURDEN; ADOLESCENT; AGED; COMPLICATION; COST OF ILLNESS; CROSS-SECTIONAL STUDY; HEALTH SURVEY; INFLAMMATORY BOWEL DISEASES; IRELAND; MIDDLE AGED; PSYCHOLOGY; SEVERITY OF ILLNESS INDEX; VERY ELDERLY; YOUNG ADULT;

ADOLESCENT; ADULT; AGED; AGED, 80 AND OVER; COST OF ILLNESS; CROSS-SECTIONAL STUDIES; FEMALE; HEALTH SURVEYS; HUMANS; INFLAMMATORY BOWEL DISEASES; IRELAND; MALE; MIDDLE AGED; SELF REPORT; SEVERITY OF ILLNESS INDEX; YOUNG ADULT;

EID: 84963837848     PISSN: 18739946     EISSN: 18764479     Source Type: Journal    
DOI: 10.1093/ecco-jcc/jjv218     Document Type: Article

References (45)

1. Baumgart DC, Berstein CN, Abbas Z, et al. IBD around the world: comparing the epidemiology, diagnosis, and treatments: proceedings of the World Digestive Health Day 2010 - Inflammatory Bowel Disease Task Force Meeting. Inflamm Bowel Dis 2011;17:639-44.
2. Molodecky NA, Shian Soon I, Rabi DM, et al. Increasing incidence and prevalence of the inflammatory bowel diseases with time, based on systematic review. Gastroenterology 2012;142:46-54.
3. Camilleri M. Managing symptoms of irritable bowel syndrome in patients with inflammatory bowel disease Gut 2012;60:425-8.
4. Keohane J, O'Mahony C, O'Mahony L, et al. Irritable bowel syndrome-type symptoms in patients with inflammatory bowel disease: a real association or reflection of occult inflammation? Am J Gastroenterol 2010;105:1788-94.
5. Harvey RF, Bradshaw JM. A simple index of Crohn's-disease activity. Lancet 1980;1:514.
6. Walmsey RS, Ayres RCS, Pounder RE, Allan RN. A simple clinical colitis activity index. Gut 1998;43:29-32.
7. Farrell D, Savage E. Symptom burden: a forgotten area of measurement in inflammatory bowel disease. Int J Nurs Pract 2012;18:497-500.
8. Portenoy RK, Thaler HT, Kornblith AB, et al. The Memorial Symptom Assessment Scale: an instrument for the evaluation of symptom prevalence, characteristics and distress. Eur J Cancer 1994;30A:1326-36.
9. Zambroski CH, Moser DK, Bhat G, Ziegler C. Impact of symptom prevalence and symptom burden on quality of life in patients with heart failure. Eur J Cardiovasc Nurs 2005;4:198-206.
10. Sawicki GS, Sellers DE, Robinson WM. Self-reported physical and psychological symptom burden in adults with cystic fibrosis. J Pain Symptom Manag 2008;35:372-80.
11. Pallant J. SPSS Survival Manual: A Step by Step Guide to Data Analysis Using SPSS for Windows. UK: Open University Press, McGraw-Hill; 2007.
12. Portenoy RK, Thaler HT, Kornblith AB, et al. Symptom prevalence, characteristics and distress in a cancer population. Qual Life Res 1994;3:183-9.
13. Walsh D, Donnelly S, Rybicki L. The symptoms of advanced cancer: relationship to age, gender and performance status in 1,000 patients. Support Care Cancer 2000;8:175-9.
14. Weisbord SD, Carmody SS, Bruns FJ, et al. Symptom burden, quality of life, advance care planning and the potential value of palliative care in severely ill haemodialysis patients. Nephrol Dial Transpl 2003;18:1345-52.
15. Davison SN, Jhangri GS, Johnson J A. Cross-sectional validity of a modified Edmonton symptom assessment system in dialysis: a simple assessment of symptom burden. Kidney Int 2006;69:1621-5.
16. Alshemmari S, Ezzat H, Samir Z, Sajnani K, Alsirafy S. Symptom burden in hospitalized patients with cancer in Kuwait and the need for palliative care. Am J Hosp Palliat Care 2010;27:446-9.
17. Davison SN, Jhangri G S. Impact of pain and symptom burden on the health-related quality of life of hemodialysis patients. J Pain Symptom Manage 2010;39:477-85.
18. Nelson Danquah FV, Zimmerman L, Diamond PM, Meininjer J, Bergstrom N. Frequency, severity and distress of dialysis-related symptom reported by patients on haemodialysis. Nephrol Nurs J 2010;37: 627-39.
19. Ghosh S, Mitchell R. Impact of inflammatory bowel disease on quality of life: results of the European Federation of Crohn's and Ulcerative Colitis (EFCCA) patient survey. J Crohn's Colitis 2007;1:10-20.
20. Haapamaki J, Turunen U, Roine RP, Farkkila MA, Arkkila PET. Finnish patients with inflammatory bowel disease have fewer symptoms and are more satisfied with their treatment than patients in the previous European survey. Scand J Gastroenterol 2008;43:821-30.
21. Norton B-A, Thomas R, Lomax KG, Dudley-Brown S. Patient perspectives on the impact of Crohn's disease: results from group interviews. Patient Prefer Adherence 2012;6:509-20.
22. Halpin SJ, Ford AC. Prevalence of symptoms meeting criteria for irritable bowel syndrome in inflammatory bowel disease: systematic review and meta-analysis. Am J Gastroenterol 2012;107:1474-82.
23. Daniel J M. Young adults' perceptions of living with chronic inflammatory bowel disease. Gastroenterol Nurs 2001;25:83-94.
24. Solomon D, Holley D, Buch M, Pym N, Paridaens K. Experience of ulcerative colitis from a patient and healthcare professional perspective: results from an international survey. Inflamm Bowel Dis 2011;17:S34.
25. Van Langenberg DR, Gibson PR. Systematic review: fatigue in inflammatory bowel disease. Aliment Pharmacol Ther 2010;32:131-43.
26. Minderhoud IM, Oldenburg B, van Dam PS, Henegouwen GPV. High prevalence of fatigue in quiescent inflammatory bowel disease is not related to adrenocortical insufficiency. Am J Gastroenterol 2003;98:1088-93.
27. Romberg-Camps MJ, Bol Y, Dagnelie PC, et al. Fatigue and health-related quality of life in inflammatory bowel disease: results from a population based study in the Netherlands: the IBD-South Limburg cohort. Inflamm Bowel Dis 2010;16:2137-47.
28. Vogelaar L, van't Spijker A, Timman R, et al. Fatigue management in patients with IBD: a randomised controlled trial. Gut 2014;63:911-8.
29. Stone CS, Minton O. Cancer-related fatigue. Eur J Cancer 2008;44:1097-104.
30. Walke LM, Byers AL, McCorkle R, Fried TR. Symptom assessment in community-dwelling older adults with advanced chronic disease. J Pain Symptom Manag 2006;31:31-7.
31. Walke LM, Gallo WT, Tinetti ME, Fried TR. The burden of symptoms among community-dwelling older persons with advanced chronic disease. Arch Intern Med 2004;164:2321-4.
32. Weisbord SD, Fried LF, Arnold RM, et al. Prevalence, severity, and importance of physical and emotional symptoms in chronic hemodialysis patients. J Am Soc Nephrol 2005;16:2487-94.
33. 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. http://dx.doi.org/10.1155/2011/492034.
34. Czuber-Dochan W, Dibley LB, Terry H, Ream E, Norton C. The experience of fatigue in people with inflammatory bowel disease: an exploratory study. J Adv Nurs 2012;69:1987-99.
35. Mowat C, Cole A, Windsor A, et al. Guidelines for the management of inflammatory bowel disease in adults. Gut 2011;60:571-607.
36. Czuber-Dochan W, Norton C, Bredin F, et al. Healthcare professionals' perceptions of fatigue experienced by people with inflammatory bowel disease. J Crohn's Colitis 2014;8:835-44.
37. Farrell D, Savage E, Norton C, Jelsness-Jørgensen L-P, Czuber-Dochan W, Artom M. Interventions for fatigue in inflammatory bowel disease [Protocol]. Cochrane Database Syst Rev 2015, accepted.
38. Lynch T, Spence D. A qualitative study of youth living with Crohn disease. Gastroenterol Nurs 2007;31:224-30.
39. Nicholas DB, Otley A, Smith C, et al. Challenges and strategies of children and adolescents with inflammatory bowel disease: a qualitative examination. Health Qual Life Outcomes 2007;5:28.
40. Savard J, Woodgate R. Young peoples' experience of living with ulcerative colitis and an ostomy. Gastroenterol Nurs 2009;32:33-41.
41. Farrell D, Savage E. Symptom burden in inflammatory bowel disease: rethinking conceptual and theoretical underpinnings. Int J Nurs Pract 2010;16:437-42.
42. Petrie KJ, Weinman J. Patients' perceptions of their illness - the dynamo of volition in health care. Curr Dir Psychol Sci 2012;21:60-5.
43. Van der Have M, Fidder HH, Leenders M, et al. Self-reported disability in patients with inflammatory bowel disease largely determined by disease activity and illness perceptions. Inflamm Bowel Dis 2015;21:369-77.
44. Lonnfor S, Vermeire S, Greco M, Hommes D, Bell C. IBD and health-related quality of life - discovering the true impact. J Crohns Colitis 2014;8:1281-6.
45. Becker HM, Grigat D, Ghosh S, Kaplan GG, Dieleman L. Living with inflammatory bowel disease: a Crohn's and Colitis Canada survey. Can J Gastroenterol Hepatol 2015;29:77-84.