Symptom burden in individuals with inflammatory bowel disease: a mixed methods study

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dc.contributor.advisor Savage, Eileen en
dc.contributor.author Farrell, Dawn en
dc.date.accessioned 2014-01-28T10:04:50Z
dc.date.issued 2013
dc.date.submitted 2013
dc.identifier.citation Farrell, D. M. 2013. Symptom burden in individuals with inflammatory bowel disease: a mixed methods study. PhD Thesis, University College Cork. en
dc.identifier.uri http://hdl.handle.net/10468/1340
dc.description.abstract To investigate the symptom burden experiences of individuals with inflammatory bowel disease (IBD). An explanatory sequential mixed methods study was conducted. A cross-sectional, correlational survey was first undertaken. Symptom burden was measured using a modified disease specific version of the Memorial Symptom Assessment Scale, which was administered to a consecutive sample of individuals with IBD (n = 247) at an IBD Outpatients department in one urban teaching hospital in Ireland. Disease activity was determined using clinical disease activity indices, which were completed by the consulting physician. A sequential qualitative, descriptive study was then conducted aimed at explaining noteworthy quantitative findings. A criterion-related purposeful sample of seven participants from the quantitative study was recruited. Semi-structured face to face interviews were conducted using an interview guide and data were analysed using content analysis. Findings revealed that participants experienced a median of 10 symptoms during the last week, however as many as 16 symptoms were experienced during active disease. The most burdensome symptoms were lack of energy, bowel urgency, diarrhoea, feeling bloated, flatulence and worry. Total symptom burden was found to be low with a mean score of 0.56 identified out of a possible range from 0 to 4. Participants with active disease (M = 0.81, SD = 0.48; n = 68) had almost double mean total symptom burden scores than participants with inactive disease (M = 0.46, SD = 0.43; n = 166) (p < 0.001). Mean total psychological symptom burden was found to be significantly greater than mean total physical symptom burden (rho = 0.73, n = 247, p < 0.001). Self-reported disease control, gender, number of flare ups in the last two years, and smoking status was found to be significant predictors of total symptom burden, with self-reported disease control identified as the strongest predictor. Qualitative data revealed tiredness, pain, bowel symptoms, worry and fear as being burdensome. Furthermore, symptom burden experiences were described in terms of its impact on restricting aspects of daily activities, which accumulated into restrictions on general life events. Psychological symptom burden was revealed as more problematic than physical symptom burden due to its constant nature, with physical and psychological symptoms described to occur in a cyclical manner. Participants revealed that disease control was evaluated not only in terms of symptoms, but also in terms of their abilities to control the impact of symptoms on their lives. This study highlights the considerable number of symptoms and the most burdensome symptoms experienced by individuals with IBD, both during active and inactive disease. This study has important implications on symptom assessment in terms of the need to encompass both physical and psychological symptoms. In addition, greater attention needs to be placed on psychological aspects of IBD care. en
dc.format.mimetype application/pdf en
dc.language.iso en en
dc.publisher University College Cork en
dc.rights © 2013, Dawn M. Farrell. en
dc.rights.uri http://creativecommons.org/licenses/by-nc-nd/3.0/ en
dc.subject Symptom burden en
dc.subject Inflammatory bowel disease en
dc.subject Crohn's disease en
dc.subject Ulcerative colitis en
dc.subject.lcsh Inflammatory bowel diseases--Patients en
dc.subject.lcsh Crohn's disease--Patients en
dc.subject.lcsh Ulcerative colitis--Patients en
dc.title Symptom burden in individuals with inflammatory bowel disease: a mixed methods study en
dc.type Doctoral thesis en
dc.type.qualificationlevel Doctoral en
dc.type.qualificationname PhD (Medicine and Health) en
dc.type.qualificationname PHD (Nursing) en
dc.internal.availability Full text not available en
dc.check.info Indefinite en
dc.check.date 10000-01-01
dc.description.version Accepted Version
dc.description.status Not peer reviewed en
dc.internal.school Nursing and Midwifery en
dc.check.type No Embargo Required
dc.check.reason No embargo required en
dc.check.opt-out Not applicable en
dc.thesis.opt-out true
dc.check.embargoformat E-thesis on CORA only en
dc.internal.conferring Autumn Conferring 2013 en


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© 2013, Dawn M. Farrell. Except where otherwise noted, this item's license is described as © 2013, Dawn M. Farrell.
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