P118 Difference of health-related quality of life between East and South Asian incident inflammatory bowel disease patients and factors associated with improvement of HRQoL at follow-up: analysis of an Asia-Pacific population-based cohort
H. Chan*1, D. Ong2, Z. Zeng3, W. Tang1, J. Ching1, K. L. Goh4, I. Hilmi4, P. Pisespongsa5, S. Aniwan6, J. Limsrivilai7, J. De Silva8, M. Niriella8, Y. F. Wang9, O. Qin9, K. Wu10, M. Abdullah11, M. Simadibrata11, H. H. Yu12, K. K. Ng13, K. L. Ling14, M. H. Chen3, J. J. Sung1, S. Ng1
1Institute of Digestive Disease, the Chinese University of Hong Kong, Hong Kong, China, 2National University Hospital of Singapore, Singapore, 3The First Affiliated Hospital of San Yat Sen University, Guangzhou, China, 4University of Malaya Medical Centre, Kuala Lumpur, Malaysia, 5Maharaj Nakorn Chiangmai Hospital, Chiangmai, Thailand, 6King Chulalongkorn Memorial Hospital, Bangkok, Thailand, 7Siriraj Hosptial, Bangkok, Thailand, 8Colombo North Teaching Hospital, Ragama, Sri Lanka, 9West China Hospital, Sichuan University, Chengdu, China, 10Department of Gastroenterology, Xijing Hospital, Fourth Military Medical University, Shaanxi, China, 11Faculty of Medicine Universitas Indonesia/Dr Cipto Mangunkusumo Hospital, Depok Municipality, Indonesia, 12Kiangwu Hospital, Macau, Macao, 13Hospital Conde S Januario, Macau, Macao, 14Singapore General Hospital, Singapore, Singapore
Little is known of changes in quality of life (HRQoL) in newly diagnosed inflammatory bowel disease (IBD) in Asia. This study prospectively assessed the pattern and factors associated with changes in HRQoL in an unselected, population-based inception cohort of IBD patients from 8 countries and areas in Asia-Pacific.
The Asia-Pacific Crohn’s and Colitis Epidemiology Study Group recruited 1 126 new IBD patients from 8 countries over 2011–2014. Patients answered the disease-specific Inflammatory Bowel Disease Questionnaire (IBDQ) and a quality of care questionnaire (QoC) at diagnosis and at follow-up (FU). Disease activity, medication use, and surgery were recorded.
At baseline, 343 patients (mean age 38.2; male 60.1%; ulcerative colitis 57.1%; Crohn’s disease 42.9%) were included. East Asians had a better IBDQ than South Asian (mean IBDQ: East Asians 161.7 and South Asians 151.5; p = 0.037) at diagnosis. Although East Asians were more likely to have knowledge about IBD before diagnosis (East Asians 13.4% and South Asians 2.9%; p = 0.029), they were less satisfied with their current status of information (% satisfied: East Asians 36.2% and South Asians 64.2%; p <0.001) and were more likely to self-seek information regarding IBD than South Asian patients (East Asians 59.4% and South Asians: 28.3%; p < 0.001). The Internet was the source of information for those who self-sought information on IBD (86.3%). Overall, only 30% received formal IBD-related education, amongst whom 1.9% received education from patient’s organisations. Unemployment was not uncommon (11.1%). A subgroup of 67 patients was included with a median follow-up 23 months (range 8–34). In this subgroup, Significant improvement in the overall IBDQ was observed (baseline score 166; FU score 193 [p < 0.001]). Disease remission was associated with improvement in IBDQ (p = 0.041), whereas use of IBD medications and surgery per se were not associated with change in IBDQ.
Knowledge on IBD before diagnosis does not correlate with patient’s satisfaction on the status of information. The majority of IBD patients in Asia did not receive formal IBD-related education at diagnosis. East Asians are more likely to have knowledge about IBD before diagnosis, are less satisfied with their status of information, and are more likely to self-seek information regarding IBD than South Asian patients are. Disease remission was associated with improvement in HRQoL in newly diagnosed IBD patients.