Gramatges M Monica, Bonaduce de Nigris Francesca, King Jason, Horowitz Marc E, Fordis Michael, Poplack David G
Oncology (Williston Park). 2018 Jan 15;32(1):e1-e10.
Survivors of childhood cancer are at increased risk for late effects of cancer therapy, but evidence suggests that adherence to follow-up care is suboptimal. Here, we review the barriers to adherence, including those unique to childhood cancer survivors, and the rationale for distribution of a survivorship care plan. We also discuss advantages and potential limitations of delivering survivorship care plans via web-based platforms, and describe the unique features of one of these platforms, Passport for Care. A baseline survey directed toward survivors and conducted through Passport for Care found that a significant proportion of survivors are unaware of their specific health risks resulting from cancer and its treatment, and compared with their parents, are less afraid of the risks of recurrence and of cancer therapy-associated late effects (n = 528). Web-based platforms such as Passport for Care have enormous potential for improving access to health information, as well as for enhancing patient, family caregiver, and healthcare provider awareness of both risks of late effects and recommended surveillance. Results from this survey also suggest the potential utility of leveraging these tools to conduct additional research on consenting survivors.
儿童癌症幸存者面临癌症治疗晚期效应的风险增加，但有证据表明他们对后续护理的依从性欠佳。在此，我们回顾了依从性的障碍，包括儿童癌症幸存者特有的障碍，以及制定生存护理计划的基本原理。我们还讨论了通过基于网络的平台提供生存护理计划的优势和潜在局限性，并描述了其中一个平台“护理护照”的独特功能。通过“护理护照”对幸存者进行的一项基线调查发现，很大一部分幸存者并未意识到癌症及其治疗带来的特定健康风险，而且与他们的父母相比，他们对复发风险和癌症治疗相关晚期效应的担忧较少（n = 528）。像“护理护照”这样的基于网络的平台在改善健康信息获取方面具有巨大潜力，同时也能提高患者、家庭护理人员和医疗服务提供者对晚期效应风险以及推荐监测的认识。这项调查的结果还表明，利用这些工具对同意参与的幸存者进行更多研究具有潜在效用。
