Evaluation of the Utility of a Transition Workbook in Preparing Adolescent and Young Adult Cancer Survivors for Transition to Adult Services

Abstract

Transition to adult care for adolescent and young adult survivors is challenging and is inclusive of several factors like knowledge and developmental, emotional, and social status of survivors and parents. This pilot study addressed the feasibility of a transition workbook, a method of preparing adolescent and young adults to transition to adult care. Using a mixed methods design, investigators also measured transition worry and readiness in 30 survivors. Support was provided throughout a 6-month period as survivors and parents completed the workbook. The workbook included sections about the treatment history of survivors, when and who to call for worrisome symptoms, prescriptions and insurance, educational goals for health practices and how to get there, and independent living. Twenty survivors completed the study and reported greater worry about leaving pediatric oncology but indicated the need to make changes to transition to adult care. Ambiguity and intimidation about transitioning to adult providers and comfort in pediatric setting were themes expressed by survivors. Results indicate the need for adult/pediatric collaborative transition programs using various standardized methods of addressing transition readiness and evaluation.

Exploring peer mentoring in pediatric transition: Perspectives of different stakeholders about accompanying patients in gastroenterology

“…Similarly, we were able to show that pediatric services do not provide resources to help young patients develop selfmanagement skills. 38 And, contrary to what we found in the literature, patients' emotional attachment to their pediatric setting 11,[39][40][41] and anxiety around establishing a new therapeutic alliance 42,43 did not appear to represent major issues among the adolescents we met.…”

Graduation Day: Healthcare Transition From Pediatric to Adult

“…Emerging adults with POCC and their parents or caregivers have added stress associated with this transfer of care . Research has shown that quality of life and appropriate management of their condition are dependent on a smooth and well‐supported transition from both the pediatric and the adult providers involved …”

“…Increasing healthcare costs with lower reimbursement rates and lower quality of life for the patients supports the need to develop individual hospital and certain condition‐specific protocols for transitioning healthcare from pediatric providers to adult providers. These protocols should involve the patient, parents or caregivers, and both pediatric and adult providers …”

“…1 Research has shown that quality of life and appropriate management of their condition are dependent on a smooth and well-supported transition from both the pediatric and the adult providers involved. 2 Criteria for transition vary from facility to facility. They may be dictated by age, development, or are specific to the condition.…”

“…These protocols should involve the patient, parents or caregivers, and both pediatric and adult providers. 2 Transition of care is very different from transfer of care. Synonyms for transition include "change," "development," and "evolution."…”