Evaluating a Transition Workbook for Childhood Cancer Survivors: a Pilot Study
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Evaluating a Transition Workbook for Childhood Cancer Survivors: a Pilot Study Devonne Ryan 1 & Paul Moorehead 2,3,4 & Roger Chafe 2,4
# American Association for Cancer Education 2020
Abstract Many childhood cancer survivors (CCS) could benefit from improved knowledge about their cancer diagnosis, the treatments received, and associated risks during the period when they transition into adult aftercare. Interventions that support the transition from pediatric to adult care have showed high patient satisfaction. We developed an educational workbook, “Life After the Janeway,” to support CCS transition into adult care. We evaluated its understandability, actionability, and overall acceptability, using an online survey based on the Agency for Healthcare Research and Quality’s Patient Education Materials Assessment Tool for Printable Material (PEMAT-P). Ten participants completed the survey. The overall PEMAT-P score was 94.06 (SD ± 7.40). Mean scores for understandability and actionability were 92.83 (SD ± 8.79) and 98.15 (SD ± 5.24) respectively. Interrater reliability found strong agreement across survey items. Participants support efforts to improve transition and felt positive about the intervention. The workbook was shown to be understandable and actionable to likely users. The next steps will focus on delivering the workbook to CCS going through their transition of care and exploring developing the workbook in an electronic format. Keywords Health education . Cancer survivorship . Childhood cancer survivorship . Workbooks . Adolescents . Transition
Background Developments in treatments for childhood cancer have led to considerably improved survival rates [1–3]. While more children are surviving cancer, the cancer treatments they received can be damaging to the developing body and may lead to future adverse health effects [3–5]. As CCS progress into adulthood, many do not continue to receive the aftercare that is recommended to monitor the late effects of their treatment [4–8]. Barriers to transitioning to adult care include a shift in autonomy to the patient, challenges with navigating the adult
* Devonne Ryan [email protected] 1
Division of Clinical Epidemiology, Faculty of Medicine, Memorial University of Newfoundland, St. John’s, Canada
2
Discipline of Pediatrics, Faculty of Medicine, Memorial University of Newfoundland, St. John’s, Canada
3
Children’s and Women’s Health, Eastern Health, St. John’s, NL, Canada
4
Janeway Pediatric Research Unit, St. John’s, NL, Canada
healthcare system, lack of formal transition plan, and need for enhanced education surrounding transition. Once CCS move into adult care, they take on increased responsibility for managing their own health. In order to do this effectively, CCS should have knowledge of their cancer, medication, treatments, and potential late effects [9]. Providing education supports during the transition could help effectively bridge the gap between pediatric and adult care. For example, interventions to support transition have shown to be beneficial f
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