PTH-096 Factors affecting patient decision-making in inflammatory bowel disease (IBD) dysplasia management: a mixed methods study

• Published in: Gut Vol. 68; no. Suppl 2; p. A80
• Main Authors: Kabir, Misha, Thomas-Gibson, Siwan, Hart, Ailsa, Wilson, Ana
• Format: Journal Article
• Language: English
• Published: London BMJ Publishing Group LTD 01.06.2019
• Subjects: Body image; Decision making; Dysplasia; Inflammatory bowel disease; Inflammatory bowel diseases; Intestine; Mixed methods research; Ostomy; Parathyroid hormone; Patients; Quality of life; Social networks
• ISSN: 0017-5749; 1468-3288
• DOI: 10.1136/gutjnl-2019-BSGAbstracts.155

IntroductionCurrent literature suggests that IBD patients have high thresholds to accept a colectomy for colonic dysplasia, but in-depth qualitative analysis of the factors that affect their decision-making is lacking.Methods100 purposively sampled IBD patients completed free text answer questionnaires and 20 went on to partake in individual semi-structured interviews. 44% of the questionnaire participants and 70% of the interview participants had previously had dysplasia. Inductive framework thematic analysis was performed. Data saturation was achieved.ResultsThemes identified are summarised:Abstract PTH-096 Table 1 Themes Sub-themes ( * most frequently occurring themes) Facilitators in shared decision-making (SDM) and decision confidence Feeling well informed: • Give balanced & accurate information* • Explain all alternative options • Address patient priorities: effect on quality of life, family, career • Allow time for independent research • Personalised risk prediction allows rational decision-making • Joint medical/surgical clinics Good relationship with clinical care team: • Trust in experience & peer consensus* • Patient-centred & supportive* Address emotional and psychological wellbeing: • Social media reduces stigma • Positivity increases confidence • Prepare for potential colectomy early • Provide counselling and patient support network Education may dispel fears (preferred formats: patients, video, leaflet Barriers in SDM Suboptimal relationship with clinical team: • Lack of options* • Feeling rushed • No continuity in care • Not patient-centred • Making wrong assumptions Internet and social media can be unrealistic and irrelevant Avoidance of reality: • Youthful naivety • Over-optimism • Fear Reasons to accept colectomy Dying from cancer is not an option* Changing priorities with age If segmental colectomy was an option Reasons to accept a stoma: • Allows more control • Uncertainty about pouch function impact on lifestyle • More acceptable in older age Reasons to accept a pouch • It’s closer to normality • Can go back to stoma if it doesn’t work Reasons to decline colectomy I feel fine, why risk my quality of life? Surveillance is reassuring enough Uncertainty in dysplasia prognosis Negative patient stories Concerns about stomas: • Not normal • Disrupts life • Body image • Leaks, smell and pain Concerns about pouches: • Pouch frequency disrupts life* • Peri-operative complications • Risk of cancer in pouch/cuff Faith in alternative therapies and lifestyle changes Fear of being a burden on family ConclusionsThis is the first in-depth qualitative study to our knowledge exploring the barriers and facilitators for shared decision-making in IBD dysplasia management. These findings should guide clinicians to embrace a more patient-centred approach.