Bridging the Gap: A Pilot Program to Understand and Meet the Needs of Pediatric Patients and Families as They Transition Off Cancer-Directed Therapy

Abstract

Background: With improved curative therapies, over 80% of children and adolescent/young adults diagnosed with cancer are expected to live into adulthood. This population is at risk for increased morbidity and early mortality and requires ongoing health care and surveillance for late effects of treatment. This pilot study assessed the acceptability of a structured medical visit at the completion of cancer-directed therapy as well as patient/family’s knowledge of diagnosis and other aspects of care. Method: Patients/families who were 0 to 6 months from completion of cancer-directed therapy attended a one-time transition visit during which they completed a series of questionnaires assessing knowledge about diagnosis, treatment, potential late effects, and duration of ongoing care. They were then given treatment summaries, a plan for follow-up care, information about care after treatment as well as late effects. They completed a questionnaire to assess their satisfaction with this visit. Results: The majority of patients/families knew their diagnosis and treatment modalities. Less knew that their treatment put them at risk for cardiac toxicity or problems with future fertility. A significant number thought follow-up care would continue for only 5 years. Overall participants were satisfied with the visit. Conclusion: The transition period from on to off therapy may be a critical time point to provide patients with cancer and their families with information regarding treatment, follow-up care and testing, and potential late effects. Future studies should assess if this intervention improves compliance with recommended care and surveillance, and improved outcomes.