Hematopoietic cell transplantation (HCT) is a treatment for hematologic malignancies and disorders. Patients who receive HCT can face long-term physical and psychosocial effects. Survivorship care guides (care guides), which describe screening and preventive care practices were mailed to allogenic HCT recipients at clinically important timepoints (6, 12, and 24 months after HCT). The primary objective of this study was to evaluate how patients perceived and used the care guides. A cross-sectional, time-series survey was sent to all National Marrow Donor Program/Be The Match allogeneic HCT recipients from September 2012 to November 2016 after the care guides were sent; patients or caregivers could respond. Respondents who returned all 3 surveys were included (554 patients; 65 caregivers), for an overall response rate of 13% (maintenance rate of 45%). The majority of patients and caregivers strongly agreed or agreed that the care guides helped them understand that post-HCT care is important to staying healthy and that they were more familiar with recommended tests at check-up appointments. Most patients who did not share the care guides with their doctors at any of the timepoints believed their doctor knew which tests were needed. Results from this study can help inform and guide development of future tools and evaluations of educational resources for patients after HCT. Tools and educational resources, such as survivorship care guides, have the potential to help empower patients to be more knowledgeable and to understand and advocate for their survivorship care needs.
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