Abstract
Background
The goals of managing inflammatory bowel disease (IBD) include eliminating disease symptoms, improving quality of life, and preventing disease progression/complications. In patients with chronic illnesses, their perception of the illness, emotional reactions, and concerns about the disease/treatment can influence self-management behaviors and their quality of life.[1] Studies of IBD patients’ self-reported disease concerns and subjective perceptions of quality of life are lacking. Here, we aim to understand IBD patients’ top concerns and goals using survey data collected within IBD Qorus, a nationwide Learning Health System for IBD with approximately 40 participating sites.
Methods
We conducted a qualitative content analysis on an open-ended question that was sent to IBD patients prior to their clinic visits with an IBD Qorus provider:
“Currently, what is your number ONE concern or goal related to your IBD? This could be related to a specific symptom (e.g., diarrhea), worry for the future (e.g., need for surgery, cost of care) or how IBD might impact an upcoming life event (e.g., wedding, travel). Or you can report that you have no current concerns or goals.”
Using the inductive approach, two independent researchers (who are not involved with direct clinical care of IBD Qorus patients) coded the responses into major and minor themes, which were then discussed with a third independent coder (an IBD Qorus provider). Each response received one or more codes (if multiple themes were mentioned).
Results
In the first 100 responses from a purposeful sample of six IBD Qorus sites (3 academic and 3 community sites in diverse rural and urban geographic locations), four domains of goals/concerns were identified: symptoms and goals for the symptoms (28/100), medication and their efficacy/side effects (28/100), IBD clinical course and management (29/100), and psychosocial effects of IBD (29/100) (Figure 1). The most common themes in each domain were: abdominal pain and fecal urgency (symptoms), biologics and side effects (medications), surgery and nutrition (IBD clinical course and management), and fear/worry and traveling (psychosocial effects) (Figure 1). Fives responses contained no concerns/goals and three were uncodeable.
Conclusion
IBD patients’ disease-related concerns and goals are broad and diverse, and our study suggests that they are evenly distributed between symptoms, medications, disease course, and psychosocial effects. Understanding patients’ perceptions about the disease and the types of information they desire can aid providers to create and achieve shared treatment goals.
Reference
Skin Side Effects of Inflammatory Bowel Disease Therapy
