Table 1.
Topics | Exercises (requests and items to address by the IBDa-specialized nurse)b |
IBD knowledge | Explain the disease for me. Mark on a drawing of the intestinal system where your disease is located. Review your onset of diagnosis, treatment history, and surgeries. Explain what symptoms you should be aware of. Explain what to do during a relapse. Where can you gather additional information about the disease? Information from the nurse: significance of alcohol and drugs on the disease. Information from the nurse: IBD in relation to sex, contraception, fertility, and pregnancy. |
Management of contact with the hospital | Explain how to contact the hospital and how to make a new appointment in the outpatient clinic. Prepare a list of topics you can reference prior to your outpatient visits. Make a list of phone numbers and contact information for the hospital. |
Medication | Explain what medication your treatment consists of (ie, type, dose, and when to take the medication). Explain how to renew prescriptions. Are you aware of how to travel with your medication? Are you aware of what travel documentation you need? |
Medical adherence | Identification of the obstacles to good adherence (ie, forgetful, self-conscious, uncomfortable, and belief by patient that “it doesn´t work anyway”). Solution to improve adherence (ie, use of alarm, pill box, and goals). |
Worries | Conversation concerning what is difficult in relation to the disease. Define beforehand who you would like to inform about the disease. Prepare sentences about the disease to be used in new relationships and among acquaintances. Conversation regarding feeling different from peers. Conversation regarding how the family manages the disease. Challenges related to absence from school and work. |
Network: family and friends | Are you aware of whom you can rely on if or when the disease progresses? Write the names of the persons that you can place in your “inner circle” and “peripheral circle” of relationships. |
Stress, pain, and fatigue | Relaxation exercise and visualization Breathing exercise Mindfulness |
aIBD: inflammatory bowel disease.
bThe exercises are performed in cooperation with the IBD-specialized nurse. Selected topics depend on the patient´s difficulties, which are partially determined from the patient’s responses to the patient-reported outcome measures (PROMs).