Forming a support group for people affected by inflammatory bowel disease

Abstract

Nidhi Swarup,1 Saumya Nayak,2 Jessie Lee,2 Srinivas Pai Raikar,2 David Hou,2 Senthil Sockalingam,2 Ken J Lee2 1Crohn’s and Colitis Society of Singapore (CCSS), The Arcadia, 2QuintilesIMS, Science Park One, Singapore Abstract: Inflammatory bowel disease (IBD) – primarily Crohn’s disease and ulcerative colitis – is a debilitating lifelong condition with significant health and economic costs. From diagnosis to management, IBD can cause huge psychosocial concerns to patients and their caregivers. This study reports an experience of a Crohn’s patient, leading to the formation of the first IBD patient support group in Singapore and how this group has evolved in the last 4 years in supporting other IBD patients. IBD patient advocacy and/or support groups facilitate open conversations on patients’ fears, concerns, preferences and needs, and may potentially improve disease knowledge and quality of life for individuals with the condition or their families. Keywords: patient advocacy groups, Crohn’s disease, ulcerative colitis, patients, caregivers

Keywords

• Patient advocacy groups
• Crohn’s disease
• Ulcerative colitis
• Patients
• Caregivers