Living With Inflammatory Bowel Disease: Online Surveys Evaluating Patient Perspectives on Treatment Satisfaction and Health-Related Quality of Life

Lay Summary Inflammatory bowel disease (IBD) greatly impacts daily life and physical and emotional health. Survey results highlight the importance of patient/health care professional communication to develop a comprehensive treatment plan and promote satisfaction in care and improved quality of life for persons living with IBD. Background The quality of life of persons living with inflammatory bowel disease (IBD) is impacted by the physical and psychosocial burdens of disease, as well as by their satisfaction with the quality of care they receive. We sought to better understand (1) the drivers of satisfaction with treatment, including treatment goals, treatment selection, and attributes of patient/health care professional (HCP) interactions, and (2) how IBD symptoms affect aspects of daily life and overall quality of life. Methods Two online questionnaires were accessed via MyCrohnsAndColitsTeam.com. The Treatment Survey assessed desired treatment outcomes, past and present therapies, and experiences with the patient's primary treating HCP. The Quality of Life survey assessed respondents' most problematic IBD symptoms and their influence on family and social life, work, and education. Respondents had Crohn's disease (CD) or ulcerative colitis (UC), were 19 years or older, and resided in the United States. All responses were anonymous. Results The Treatment Experience survey was completed by 502 people (296 CD, 206 UC), and the Quality of Life survey was completed by 302 people (177 CD, 125 UC). Reduced pain, diarrhea, disease progression, and fatigue were the most desired goals of treatment. Biologics and 5-aminosalicylates were reported as a current or past treatment by the greatest proportion of patients with CD and UC, respectively. A numerically lower proportion of respondents with UC than CD reported use of biologic or small molecule therapy; conversely, a numerically greater proportion of respondents with UC than CD reported these drugs to be very or extremely effective. The HCP was key in the decision to switch to, and in the selection of, biologic or small molecule therapy. Overall satisfaction with an HCP was greatly driven by the quality and quantity of the communication and of the time spent with the HCP. Troublesome abdominal symptoms most impacted aspects of social and family life. Emotional challenges associated with IBD were experienced by most respondents. Conclusions Treatment goals of respondents seem to align with HCPs overall treatment goals, including control of gastrointestinal symptoms and prevention of disease progression. Persons with UC might be offered biologic and small molecule therapies less often, despite reported high efficacy by users. Feeling heard and understood by the HCP are key drivers of treatment satisfaction. Quality communication in the patient/HCP relationship enables a better understanding of the patients' goals, disease burden, and emotional needs, which are all key factors to consider when developing a personalized and comprehensive treatment plan and optimizing quality of life.