Improving Transition to Follow-up Care in Childhood Cancer Survivors: Development of a Questionnaire to Measure Transition Readiness

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Core Research Area
Health Services Research
Principal Investigator
Norma D'agostino
Co-Investigators
Ronald Barr and Anne Klassen (McMaster Children's Hospital), Paul Nathan, Mark Greenberg, and Katherine Boydell (Hospital for Sick Children)
Childhood cancer survivors frequently fail to recognize the benefit of continuing follow-up in the adult setting and drop out of the cancer care system. Clinical data from SickKids/Princess Margaret Cancer Centre reveals that approximately one third of survivors are lost to follow-up during their transition from pediatric to adult care, and more survivors drop out of care in subsequent years. We aim to develop a “Transition Readiness” questionnaire that can be used in clinical practice to identify the patients most likely to fail to transition or to drop out of adult survivor care in order that we, and others, can address patients’ issues through educational strategies and increase adherence to long-term follow-up, improving the health care provision to survivors and consequent enhancement of their health status and health-related quality of life. The first phase of the study will involve in-depth interviews with approximately 32 survivors of childhood cancer. This will be used to gain an understanding of the barriers and facilitators of successful transition from pediatric to adult care, and will guide the generation of the items that will be used in the Transition Readiness questionnaire.

Study Contact
Norma D'agostino 416-581-8636 or Norma.D'agostino@uhn.ca