1. Symptom Burden Experiences in Inflammatory Bowel Disease from a Patient’s Perspective Presenter: Dawn Farrell Doctoral Student Supervisor: Professor Eileen Savage Catherine McAuley School of Nursing & Midwifery University College Cork

2. Background Inflammatory Bowel Disease (IBD) Chronic autoimmune condition of the GI tract Crohn’s disease and ulcerative colitis Unknown etiology Recently recognised as a global long term condition (Baumgart et al. 2011; Molodecky et al. 2012) Affects approximately 2.2 million people worldwide (Loftus, 2004) Estimated 15,000 people in Ireland with a diagnosis of IBD (Irish Society of Colitis and Crohn’s Disease, 2010) Another 500 cases diagnosed each year (The Centre for Colorectal Disease, 2011)

3. Experience of IBD Experience a wide range of physical and psychological symptoms Negative impact of symptoms Potential of symptom burden

4. Focus on Symptom Burden Growth of interest in symptom burden research Symptom burden not previously studied in IBD Lags behind symptom burden research in other chronic illnesses Recent clinical guidelines on IBD highlight the area of symptom research as an under-researched topic (Mowat et al., 2011)

5. Aim To provide an in depth understanding of symptom burden experiences of individuals with IBD, with a particular focus on explaining previously identified quantitative findings Note: Presentation is focusing on qualitative findings which were part of a larger study

6. Methodology Approach: Explanatory sequential mixed methods study (main study) Qualitative Phase: Descriptive design Sample: Purposeful sample of seven individuals with Crohn’s disease and ulcerative colitis, who reported a high symptom burden score in the previous symptom burden survey Data Collection: Face-to-face interviews using a semi- structured interview guide Data Analysis: Thematic content analysis

7. Findings Sample characteristics Age range: 21 years to 66 years Diagnosis Crohn’s disease n = 3 Ulcerative colitis n = 4 Length of time since diagnosis: 1 year to 25 years Self-reported disease control as “well controlled”

8. Findings Low total symptom burden Symptom burden experience Tiredness, pain and bowel symptoms Emotional side to symptom burden Impact of symptoms Restrictions on daily activities Restrictions on daily life Psychological symptom burden greater than physical symptom burden Constant nature of worry or fear Vicious circle of physical and psychological symptoms

9. Tiredness, Pain and Bowel Symptoms ….debilitating….to have your stomach in pain constantly (P6; Male; aged 39; CD) Having to go the toilet every hour, non stop… (P7; Female, aged 66; UC) …am, the urgency and the diarrhoea was, for me anyway, the worst part of it, like you know that not knowing (P3; Female; aged 40; UC) Oh the tiredness....you just go into a mode of listlessness, just you know…absolutely fatigued, most of the time (P2; Male; aged 54; CD

10. Emotional Side to Symptom Burden People are generally terribly happy and nice but I can’t build up that happiness and that pleasantness or the social aspect of talking to people. I cannot do it! You know it is all about the sadness that would be within me, that I couldn’t, if I had active colitis (P7; Female; aged 66; UC) I get frightened some days when I see the blood coming at times (P2; Male; aged 54; CD) You know you are not going to escape it and the fear is there all the time as well (P7; Female; aged 66; UC) Planes now and travelling that would be an awful worry for me…you are stuck into a corner on a plane and you have to stay there (P7; Female; aged 66; UC)

11. Restrictions on Daily Activities I wasn’t able to go to the gym because of not having any energy…the lack of energy, the tiredness….you don’t want to go anywhere! …it affects your social life…even getting up in the morning (P5; Male; aged 21; UC) I couldn’t move properly. I just couldn’t walk around. I couldn’t …do anything! (P6; Male; aged 39; CD) I wouldn’t go to the theatre if I thought I would need to go to the toilet during the show (P7; Female; aged 66; UC) I was just going from work to home, I wasn’t working properly because I just couldn’t. I couldn’t physically do it (P6; Male; aged 39; CD)

12. Restrictions on Life Events You know I would love to go back and play football and hurling, but I can’t take a kick or bang (P6; Male; aged 39; CD) I mean it (Crohn’s disease) is already after costing me my livelihood. I am scarcely surviving on what I am on and that is disability. I don’t want to be on that thing! (P2; Male; aged 54; CD) I was sick doing my leaving certificate, didn’t get the results I wanted (P1; Female; aged 26; CD) I mean like you just couldn’t go out, so it affected my relationship with my girlfriend. You know which is hard enough with a bag anyway (P6; Male; aged 39; CD)

13. The Constant Nature of Worry or Fear I was just constantly anxious, constantly exhausted, constantly going to the toilet (P1; Female; aged 21; CD) I think it is there all the time, at the back of your mind. And you are aware of it all of the time (P7; Female; aged 66; UC) I have been very very lucky, in so far my symptoms when they do flare up where it might be bad for a week or two, it calms down (P4; Male; aged 39; CD) I suppose I kept thinking and trying to focus on dealing with the physical symptoms and then work through the psychological symptoms (P1; Female; aged 26;CD)

14. The Vicious Circle of Physical and Psychological Symptoms It is kind of a circle. If you worry about it, you bring it on and because you have brought it on you worry that it is going to get worse and you end up in a circle and you have to break that loop (P4; Male; aged 32; UC) You know you are not going to escape it and that fear is there all the time. You know if it doesn’t happen today it might happen next week or it might happen next month, but it is going to happen (P7; Female; aged 66; UC) I suppose the minute the symptoms are controlled, psychologically you would relax a small bit (P1; Female; aged 26; CD) If the bowel is settled, I am settled (P2; Male; aged 54; CD)

15. Conclusion Individuals are burdened by physical symptoms, particularly during active disease Psychological burden is evident as a constant along the disease trajectory Concept of symptom burden should be broadened to encompass its impact Need to target most burdensome symptoms Greater focus on psychological care required

16. Acknowledgements Professor Eileen Savage Professor Geraldine McCarthy Professor Fergus Shanahan All the individuals who participated in both phases of this mixed methods study