Searching for success: Improving the quality of transitional care for young people living with IBD

Puberty brings many changes. If you have a chronic illness, another big change comes with it; the transition to adult care. For some adolescents a logical step for others a big bump. Not only is it a different caregiver, but different skills are expected. An important skill is being able to take care of your illness independently (self-management). To measure this skill, we have made the widely used questionnaire; Transition Readiness Assessment Questionnaire (TRAQ) available in Dutch. Knowledge about your disease can increase your self-management, so we designed questionnaire for young people with inflammatory bowel disease (IBD) to test knowledge about their disease (Rotterdam Transition Test). Young people only indicate that they prefer not to fill in such questionnaires too often and too much. Until now, how this care is delivered is dependent on the commitment of healthcare providers and is not reimbursed by health insurers. When is such a transition successful? Together with a group of international colleagues, we looked at what items are important for transition success. This is the basis for the Transition Success Score (TSS), which focuses on young adult patient behaviour and satisfaction with the transition process and that of their parents. TSS shows that transition care needs to be personalised so that each young adult can find their way into adult care with the right guidance.