A portable survivorship care plan: a tool that helps educate and improve knowledge in childhood cancer survivors

• Published in: Supportive care in cancer 2021-01, Vol.29 (1), p.169-177
• Main Authors: Murphy, Patricia, Levine, Alyssa, Lerma, Tanya, Young, Sabrina, Hwang, Jimmy, Goldsby, Robert
• Format: Article
• Language: English
• Subjects: Adult; Aftercare; Ambulatory Care - statistics & numerical data; Cancer; Cancer in children; Cancer Survivors - education; Cancer Survivors - psychology; Cancer therapies; Care and treatment; Child; Child, Preschool; Childhood; Delivery of Health Care; Female; Health care industry; Health care reform; Health education; Health Knowledge, Attitudes, Practice; Humans; Knowledge; Male; Medicine; Medicine & Public Health; Neoplasms - therapy; Nursing; Nursing Research; Oncology; Oncology, Experimental; Original; Original Article; Pain Medicine; Passports; Patient education; Quality of Life - psychology; Rehabilitation; Rehabilitation Medicine; Side effects; Surveys and Questionnaires; Survivor; Survivorship
• ISSN: 0941-4355; 1433-7339
• DOI: 10.1007/s00520-020-05422-z

Purpose There is a growing population of survivors of childhood cancer at risk for late effects that can affect their overall quality of life. There is evidence that they have inadequate knowledge about their diagnosis, treatment, and subsequent late effects. A randomized study was conducted to determine if a portable credit card–sized plastic card, the “Survivor Healthcare Passport,” improved the survivor’s knowledge of diagnosis, treatment, risks, and follow-up care. The study included 126 patients 2 years post-end of cancer treatment and took place at the UCSF Benioff Children’s Hospital Survivorship Clinic. Methods Patients attending the UCSF Survivorship clinic were randomized to receive or not receive a passport at their first survivorship clinic visit. Each groups’ knowledge of diagnosis, treatment history, and follow-up needs was assessed at three time points with a questionnaire. Results Patients who received the passport distributed immediately after their visit demonstrated improved and sustained knowledge compared with survivors who did not receive the passport until more than 4 months later. Conclusion Enhancing a survivor’s knowledge is an important endeavor and a continual challenge for practitioners in survivorship clinics. This portable educational tool helps improve patient knowledge of their cancer, therapy, and follow-up needs. By providing a tangible card that is quick and easy to access, survivors have access to their treatment late effects and follow-up needs that can also be shared with other healthcare providers.