This is a study to find out how to make healthcare better for patients with IBD. A lot of people don’t receive good health care. This might be related to problems with the healthcare system, such as issues with insurance, prescriptions, clinics, hospitalizations, and communication with doctors. We think patients and their families can help figure out ways to make things better. So we want to learn about problems you and your family has had with your IBD care.
This study will be done at Nationwide Children’s Hospital and we hope to enroll 75 participants.
This study involves participating in 3 study visits which occur at the same time as your regular office visits with your doctor and several phone calls. If you agree to be in the study, we will arrange your 3 study visits with your regular doctor’s visits. The first visit will be shortly after being diagnosed with IBD. The second visit will be at about 6 months. The third visit will be at 1 year. You will complete the questionnaires online before your clinic visit. If you are not able to complete the questionnaires before the visit, you can complete them at the clinic visit using a laptop or iPad. The same parent will complete the questionnaires (survey forms) throughout the study. The child will complete the questionnaires if they are a certain age. When possible, we will also invite another parent to participate. The surveys are about quality of life and types of support. The other survey is about types of barriers or challenges that you/your family face as it relates to IBD. It will take about 15-30 minutes to complete the surveys. Study staff will call the parent between study visits. The purpose of the phone calls is to discuss barriers and challenges you/your family face every 6 months and after all clinic visits, procedures, and hospitalizations. This helps learn more about what happens between the 3 study visits while it is still fresh in your mind. You/your family will interact with the health system in many ways at different times. Some examples at the time of diagnosis are clinic visits, lab tests, and scopes. Some patients may need to be admitted to the hospital for flare-ups or have surgery. Some patients have trouble with prescriptions, or insurance. Some patients have trouble scheduling appointments or communicating with their doctor/nurse. It is important to learn about barriers and potential solutions at each of these interactions.
If you have questions about this study you may contact the Principal Investigator at (614) 722-3066