Leandra Desjardins / Marco Bonanno – Sainte-Justine Children’s Hospital

Project Title: “Targeted transition readiness workshops for pediatric brain tumour survivors: Feasibility and preliminary efficacy”

Description of Project:

Survivorship for children diagnosed with brain tumors can include physical, cognitive, and psychosocial challenges. Routine follow-up care as adults is therefore essential to their long­term health and quality of life outcomes. Adult healthcare settings differ from pediatric settings in placing increased responsibility on the patient to independently plan medical appointments and manage their medical needs. To successfully navigate transition to adult healthcare, it is recommended that youth in pediatric care develop transition readiness skills. Existing transition readiness interventions often focus on disease management. However, PBTS are also at risk of social competence and cognitive functioning challenges that further complicate their transition readiness. In this study, we propose the first targeted transition intervention workshops specifically designed to meet the needs of pediatric brain tumor survivors and their caregivers. Specifically, workshops will include information and transition skills relevant to disease management, social competence, and cognitive functioning. We will be evaluating targeted transition workshop: a) feasibility and acceptability (recruitment, retention, satisfaction), and b) preliminary efficacy (indicators that the workshop increases transition readiness skills). Results of the study will inform refinement and future broader implementation of the targeted transition readiness workshops for pediatric brain tumor survivors.

What receiving this award means:

We are thrilled that the project “Targeted transition readiness workshops for pediatric brain tumour survivors: Feasibility and preliminary efficacy” was selected for a Brain Tumor Foundation of Canada Feature Grant. This project is focused supporting skills needed for pediatric brain tumor survivors to transition from pediatric to adult care, and especially the need to tailor care to the specific needs of brain tumor survivors. This award is incredibly meaningful as it highlights the importance of attending to the psychosocial needs of survivors, which is an important aspect of health and quality of life. Moreover, it highlights the importance of continuing to support adolescents and young adults along their survivorship journey. We are grateful for the recognition of this important topic and committed to contributing to ways of improving psychosocial outcomes for pediatric brain tumor survivors.

Midpoint Review- September 2023

The grant obtained by the Brain Tumour Foundation of Canada allowed us to create the first targeted transition intervention workshops specifically designed to meet the needs of pediatric brain tumor survivors and their caregivers. During the first year, we prepared the research protocol and all of the documents necessary for acceptance by the ethics committee. At the same time, we worked on the content and the format of three workshops that have been co-created with several health professionals (e.g.: psychologist, social worker, nurse, occupational therapist) and a mother of a pediatric brain tumor survivor. Each workshop covered a specific topic related to the needs of pediatric brain tumor survivors and their caregivers: 1) disease self-management, 2) interpersonal skills, and 3) cognitive and daily life functioning. We have also created a detailed manual describing the content and the format of each workshop to help us lead them and to allow use of the intervention in other centers in Canada in the future. Then, we started recruitment of young brain tumor survivors and their parents to participate in the workshops. Finally, the three workshops took place from March to August 2023 and we had 24 people (parents and young brain tumor survivors) who participated. Preliminary results from participants’ answers to a satisfaction survey and interviews indicated how much it was appreciated for them to participate and learn about transition topics, have information about resources, meet other people who experience similar situations, and share about their experiences together. In the coming months, we will be finishing data collection and analyses and preparing to share the final results of the study in papers, presentations and community talks. We are also excited about sharing the intervention more broadly with others who might benefit from the resources we created. We are so grateful for the support of the Brain Tumor Foundation of Canada for making this work possible.