Multi-center randomized controlled trial to test the effectiveness of family-centered advance care planning in adolescents with cancer and their parents (pACP)

Adolescents with cancer and their parents face various uncertainties and complex decisions about care and treatment. While advance care planning (ACP) has been promoted as a successful model of communication between patients, their family and health care professionals regarding future care and treatment, little attention has been paid to implementing ACP in the group of adolescents with cancer with their particular complexities. Translating the concept of ACP from adult care into
adolescents is a necessary next step in an era of increasing focus on patient and family-centred healthcare in paediatrics.
This research project aims to develop an ACP intervention for the Belgian paediatric care context (based on an existing intervention from the USA) and evaluate its effectiveness using a randomized controlled trial. The primary endpoint is improved congruence between adolescents with cancer, and their families about future treatment preferences, which will help them to prepare them for future situations and provide care that more adequately addresses patients’ preferences. This will be the first robust trial to test ACP in a paediatric population, which will also critically enhance our understanding of the intervention’s sustainability in in paediatric oncology. If shown to be effective,
this ACP intervention has the potential of being beneficial to adolescents with other chronic lifelimiting illnesses and more easily transferrable to other European countries.