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

Abstract

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.

Awareness of diagnosis, treatment and risk of late effects in Chinese survivors of childhood cancer in Hong Kong

“…17 , 36 Emerging studies are now supporting the benefits of SCPs in terms of improving survivors’ comprehension of health information and facilitating communication between survivors, oncologists and PCPs. 37 , 38 , 39 For example, one study demonstrated that the provision of an SCP and professional counselling can effectively motivate survivors of childhood cancer who were treated with cardiotoxic therapies to undergo cardiomyopathy screening. 40 Currently, we are incorporating individualized counselling on personal health risks into a centralized survivorship programme for local survivors of childhood cancer in Hong Kong.…”

“…This finding provides an important basis for the development of a personalized ‘Survivorship Care Plan’ (SCP) during the early phase of a patient's cancer survivorship journey 17,36 . Emerging studies are now supporting the benefits of SCPs in terms of improving survivors’ comprehension of health information and facilitating communication between survivors, oncologists and PCPs 37‐39 . For example, one study demonstrated that the provision of an SCP and professional counselling can effectively motivate survivors of childhood cancer who were treated with cardiotoxic therapies to undergo cardiomyopathy screening 40 .…”

2022 ESC Guidelines on cardio-oncology developed in collaboration with the European Hematology Association (EHA), the European Society for Therapeutic Radiology and Oncology (ESTRO) and the International Cardio-Oncology Society (IC-OS)

“…Patients should also be advised not to stop cardioprotective therapies without medical guidance, even if they recover their cardiac function. To help in this complex task, leaflets specifically designed for this context may be used, 832,833 eventually with the aid of digital tools (Figure 47).…”

Surveillance for radiation‐related late effects in childhood cancer survivors: The impact of using volumetric dosimetry

“…Approaches have been developed to automate the extraction of this information, facilitating the creation of patient‐specific guides 26 . Such care plans have been shown to enhance survivors' understanding of their follow‐up needs 27 and create a crucial reference for future care providers 28 . Use of VD to determine late effects surveillance aligns with the goal to improve patient knowledge of their own health state while taking advantage of available technology and personalized medicine.…”