Shuldiner Jennifer, Shah Nida, Reis Catherine, Chalmers Ian, Ivers Noah, Nathan Paul
Institute for Health System Solutions and Virtual Care, Women's College Hospital, Toronto, ON, Canada.
Child Health Evaluative Sciences, The Hospital for Sick Children Research Institute, Toronto, ON, Canada.
JMIR Hum Factors. 2022 Sep 13;9(3):e37606. doi: 10.2196/37606.
Survivors of childhood cancer are at lifelong risk of morbidity (such as new cancers or heart failure) and premature mortality due to their cancer treatment. These are termed late effects. Therefore, they require lifelong, risk-tailored surveillance. However, most adult survivors of childhood cancer do not complete recommended surveillance tests such as mammograms or echocardiograms.
In partnership with survivors, family physicians, and health system partners, we are designing a provincial support system for high-priority tests informed by principles of implementation science, behavioral science, and design thinking.
Our multiphase process was structured as follows. Step 1 consisted of a qualitative study to explore intervention components essential to accessing surveillance tests. Step 2 comprised a workshop with childhood cancer survivors, family physicians, and health system stakeholders that used the Step 1 findings and "personas" (a series of fictional but data-informed characters) to develop and tailor the intervention for different survivor groups. Step 3 consisted of intervention prototype development, and Step 4 involved iterative user testing.
The qualitative study of 30 survivors and 7 family physicians found a high desire for information on surveillance for late effects. Respondents indicated that the intervention should help patients book appointments when they are due in addition to providing personalized information. Insights from the workshop included the importance of partnering with both family physicians and survivorship clinics and providing emotional support for survivors who may experience distress upon learning of their risk for late effects. In our user-testing process, prototypes went through iterations that incorporated feedback from users regarding acceptability, usability, and functionality. We sought to address the needs of survivors and physicians while balancing the capacity and infrastructure available for a lifelong intervention via our health system partners.
In partnership with childhood cancer survivors, family physicians, and health system partners, we elucidated the barriers and enablers to accessing guideline-recommended surveillance tests and designed a multifaceted solution that will support survivors and their family physicians. The next step is to evaluate the intervention in a pragmatic randomized controlled trial.
儿童癌症幸存者因其癌症治疗而终生面临发病风险（如新发癌症或心力衰竭）和过早死亡风险。这些被称为迟发效应。因此，他们需要进行终生的、根据风险定制的监测。然而，大多数儿童癌症成年幸存者并未完成推荐的监测检查，如乳房X光检查或超声心动图检查。
我们与幸存者、家庭医生及卫生系统合作伙伴合作，依据实施科学、行为科学和设计思维原则，设计一个针对高优先级检查的省级支持系统。
我们的多阶段流程如下。第一步是进行定性研究，以探索获取监测检查所必需的干预要素。第二步是与儿童癌症幸存者、家庭医生及卫生系统利益相关者举办一次研讨会，利用第一步的研究结果和“人物角色”（一系列虚构但基于数据的角色）为不同的幸存者群体开发并定制干预措施。第三步是开发干预原型，第四步是进行迭代用户测试。
对30名幸存者和7名家庭医生的定性研究发现，他们对迟发效应监测信息有很高的需求。受访者表示，干预措施除了提供个性化信息外，还应帮助患者在应进行检查时预约。研讨会上的见解包括与家庭医生和幸存者诊所合作的重要性，以及为那些在得知自己有迟发效应风险时可能感到痛苦的幸存者提供情感支持。在我们的用户测试过程中，原型经过了多次迭代，纳入了用户关于可接受性、可用性和功能性的反馈。我们试图在满足幸存者和医生需求的同时，通过我们的卫生系统合作伙伴平衡为终生干预提供的能力和基础设施。
我们与儿童癌症幸存者、家庭医生及卫生系统合作伙伴合作，阐明了获取指南推荐的监测检查的障碍和促进因素，并设计了一个多方面的解决方案，以支持幸存者及其家庭医生。下一步是在一项实用的随机对照试验中评估该干预措施。
