Introduction There is limited data on the concerns experiences of adolescent IBD patients in relation to surgery in a period of significant physical and emotional changes in their lives in addition to the added burden of a chronic disease. Understanding this may impact on the provision of care that is provided for these young patients for decision making, coping skills and overall adjustment. We aimed to study the experiences and concerns in adolescent IBD patients undergoing surgery to facilitate development of a programme aimed at improving this area of care.
Methods This was a qualitative questionnaire study. IBD patients between the ages of 18–24 with history of surgery for IBD during adolescent years were invited to participate and informed consent was obtained. All had undergone structured transition into adult services from paediatric care.
Results 24 patients (12 males, 12 females) were included. 23 patients included had Crohn’s disease. 16 (66.6%) had undergone resection and 6 (37.5%) had resulted in a stoma, 3 of which was permanent. 6 (25%) had undergone EUA with drainage and Seton insertion for perianal CD. Two patients underwent gastrojejunostomy and I patient had panproctocolectomy. Four patients (16.6%) had multiple surgeries.
The main concerns pre surgery were: physical changes of having a scar or stoma (17 Patients, 71%), being away from family, friends and partners (17 patients, 71%) and anxiety regarding post-operative complications (13 patient, 54%). All patients discussed their concerns with family and friends but only 15 (62.5%) spoke with their Consultant or IBD/Stoma Nurse regarding their concerns. Of the 17 (70.83%) who had opportunity to speak to other patients, only 8 found this to be beneficial. Majority (20, 83%) accessed literature in preparation for their procedure but 8 (40%) felt this provided little or no help to them.
Post procedure, all patients felt they got support from friends and family. In addition 8 had (45.8%) turned to a partner for support. Use of support from health care professionals was not mentioned.
Coping strategies post-operatively by patients varied greatly and included family support, and spiritual support. However in a proportion of patients there were significant difficulties in coping post-surgery leading to ‘giving up’, self-blame and substance and/or alcohol use. Despite this Only 1 (4.1%) patient wished they had not gone ahead with it. Concerns regarding residual surgical scars were reported by only 5 (20.8%) patients.
Conclusion This study gives valuable insights into young people’s concerns and experiences when facing surgery for their IBD and areas of intervention which will benefit. Personalised approach to these patients in their most vulnerable stage of life would be beneficial and an IBD nurse involved in transition may be an integral part in providing this.
Disclosure of Interest None Declared
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