Self-reported Symptom Burden in Individuals with Inflammatory Bowel Disease

Overview

Journal J Crohns Colitis

Publisher Oxford University Press

Date 2015 Nov 25

PMID 26598526

Citations 55

Authors

Dawn Farrell

Geraldine McCarthy

Eileen Savage

Affiliations

Soon will be listed here.

Abstract

Background And Aims: Individuals with inflammatory bowel disease experience debilitating symptoms on a daily basis, but little is known about symptom burden in IBD. The objectives were to (i) identify the most prevalent symptoms and the average number of symptoms experienced; (ii) assess symptom frequency, severity and distress; and (iii) determine the most burdensome symptoms experienced by individuals with inflammatory bowel disease.

Methods: A cross-sectional descriptive design was used to collect data in a single regional treatment centre in Ireland. A consecutive and unique sample of 247 individuals diagnosed with Crohn's disease and ulcerative colitis completed a modified disease-specific version of the Memorial Symptom Assessment Scale.

Results: Participants reported experiencing a median of 10 symptoms during the last week, but as many as 16 symptoms were experienced by those with active disease. Of the symptoms experienced, lack of energy was identified as the most burdensome symptom. Bowel symptoms of urgency and diarrhoea and irritable bowel syndrome-type symptoms such as feeling bloated and flatulence were also problematic. Worry was ranked the most burdensome psychological symptom experienced. Symptom burden scores varied according to disease type and disease status, with significant differences found between those with active and inactive disease.

Conclusions: Individuals with inflammatory bowel disease experience a considerable number of symptoms and are burdened by both physical and psychological symptoms, particularly during active disease. Healthcare professionals' focus of assessment needs to be broadened to encompass multiple symptoms. Greater attention needs to be given to fatigue and psychological symptoms.

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References

Lynch T, Spence D . A qualitative study of youth living with Crohn disease. Gastroenterol Nurs. 2008; 31(3):224-30. DOI: 10.1097/01.SGA.0000324114.01651.65. View

Van Langenberg D, Gibson P . Systematic review: fatigue in inflammatory bowel disease. Aliment Pharmacol Ther. 2010; 32(2):131-43. DOI: 10.1111/j.1365-2036.2010.04347.x. View

Vogelaar L, Vant Spijker A, Timman R, van Tilburg A, Bac D, Vogelaar T . Fatigue management in patients with IBD: a randomised controlled trial. Gut. 2013; 63(6):911-8. DOI: 10.1136/gutjnl-2013-305191. View

Walmsley R, Ayres R, Pounder R, Allan R . A simple clinical colitis activity index. Gut. 1998; 43(1):29-32. PMC: 1727189. DOI: 10.1136/gut.43.1.29. View

Farrell D, Artom M, Czuber-Dochan W, Jelsness-Jorgensen L, Norton C, Savage E . Interventions for fatigue in inflammatory bowel disease. Cochrane Database Syst Rev. 2020; 4:CD012005. PMC: 7161727. DOI: 10.1002/14651858.CD012005.pub2. View

Weisbord S, Fried L, Arnold R, Fine M, Levenson D, Peterson R . Prevalence, severity, and importance of physical and emotional symptoms in chronic hemodialysis patients. J Am Soc Nephrol. 2005; 16(8):2487-94. DOI: 10.1681/ASN.2005020157. View

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(7):446-9. DOI: 10.1177/1049909110362438. View

Nicholas D, Otley A, Smith C, Avolio J, Munk M, Griffiths A . Challenges and strategies of children and adolescents with inflammatory bowel disease: a qualitative examination. Health Qual Life Outcomes. 2007; 5:28. PMC: 1892542. DOI: 10.1186/1477-7525-5-28. View

Jelsness-Jorgensen L, Moum B, Bernklev T . Worries and Concerns among Inflammatory Bowel Disease Patients Followed Prospectively over One Year. Gastroenterol Res Pract. 2011; 2011:492034. PMC: 3168269. DOI: 10.1155/2011/492034. View

10.

Stone P, Minton O . Cancer-related fatigue. Eur J Cancer. 2008; 44(8):1097-104. DOI: 10.1016/j.ejca.2008.02.037. View

11.

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. 2010; 1(1):10-20. DOI: 10.1016/j.crohns.2007.06.005. View

12.

Baumgart D, Bernstein C, Abbas Z, Colombel J, Day A, DHaens G . IBD Around the world: comparing the epidemiology, diagnosis, and treatment: proceedings of the World Digestive Health Day 2010--Inflammatory Bowel Disease Task Force meeting. Inflamm Bowel Dis. 2010; 17(2):639-44. DOI: 10.1002/ibd.21409. View

13.

Norton B, Thomas R, Lomax K, Dudley-Brown S . Patient perspectives on the impact of Crohn's disease: results from group interviews. Patient Prefer Adherence. 2012; 6:509-20. PMC: 3413071. DOI: 10.2147/PPA.S32690. View

14.

Romberg-Camps M, Bol Y, Dagnelie P, Hesselink-van de Kruijs M, Kester A, Engels L . 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(12):2137-47. DOI: 10.1002/ibd.21285. View

15.

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(3):175-9. DOI: 10.1007/s005200050281. View

16.

Portenoy R, Thaler H, Kornblith A, Lepore J, Kiyasu E, Sobel K . The Memorial Symptom Assessment Scale: an instrument for the evaluation of symptom prevalence, characteristics and distress. Eur J Cancer. 1994; 30A(9):1326-36. DOI: 10.1016/0959-8049(94)90182-1. View

17.

Walke L, Byers A, McCorkle R, Fried T . Symptom assessment in community-dwelling older adults with advanced chronic disease. J Pain Symptom Manage. 2006; 31(1):31-7. DOI: 10.1016/j.jpainsymman.2005.05.014. View

18.

Harvey R, Bradshaw J . A simple index of Crohn's-disease activity. Lancet. 1980; 1(8167):514. DOI: 10.1016/s0140-6736(80)92767-1. View

19.

Becker H, Grigat D, Ghosh S, Kaplan G, Dieleman L, Wine E . Living with inflammatory bowel disease: A Crohn's and Colitis Canada survey. Can J Gastroenterol Hepatol. 2015; 29(2):77-84. PMC: 4373565. DOI: 10.1155/2015/815820. View

20.

Czuber-Dochan W, Norton C, Bredin F, Darvell M, Nathan I, Terry H . Healthcare professionals' perceptions of fatigue experienced by people with IBD. J Crohns Colitis. 2014; 8(8):835-44. DOI: 10.1016/j.crohns.2014.01.004. View