Living with inflammatory bowel disease in Australia: quality of life and the impact of support networks

Background: Factors that influence quality of life (QoL) are used to determine the burden of disease, risk factors, and monitor management. Objectives: This study investigated the Australian inflammatory bowel disease (IBD) population and factors that affect QoL. Design: A national online survey was available to Australian IBD patients. Respondents were required to have a medical diagnosis of Crohn's disease or ulcerative colitis, over 18 years of age, and receive healthcare in Australia. Methods: A mixture of validated questionnaires and additional questions were utilized to assess disease activity, QoL, and depression, anxiety and stress levels as well as demographic information. A variety of nonparametric statistical tests were used to explore relationships and compare groups. Results: A total of 825 participated in the survey across Australia with a 75% completion rate. The median Crohn's and Ulcerative Colitis Questionnaire-8 (CUCQ-8) score was 37 with higher scores indicating worse QoL; those who have access to local support networks (Md = 36) had significantly lower CUCQ-8 scores compared to those who do not (Md = 44), U = 38,178, p = 0.014, r = 0.1. Similarly, those who feel adequately supported by local networks (Md = 35) had significantly lower CUCU-8 compared to those who do not (Md = 48), U = 30,772, p < 0.001, r = 0.21. Furthermore, perceived adequate support was associated with higher levels of QoL and lower levels of psychological stress. Heightened levels of psychological stress were associated with reduced QoL and increased disease activity. Conclusion: Support networks are essential to improve QoL. Local support networks may reduce psychological stress, improve disease activity, and enhance QoL. Management strategies are inadequate to minimize the decline in QoL when disease activity is heightened; therefore, the integration of adequate local support networks may be beneficial to assist management for Australians with IBD.