Department of Family Medicine, McGill University, 5858 Chemin de la Côtes-des-Neiges, Suite 300, Montreal, Quebec, H3S 1Z1, Canada.
Department of Respiratory Medicine, Amsterdam University Medical Center, Location Academic Medical Center, Meibergdreef 9, Office F5-259, Amsterdam, North Holland, 1105AZ, the Netherlands.
BMC Palliat Care. 2021 Jan 12;20(1):15. doi: 10.1186/s12904-021-00709-2.
Effective communication in support of clinical decision-making is central to the pediatric cancer care experience for families. A new laboratory derived pharmacogenetic test (LDT) that can diagnose difficult-to-treat brain cancers has been developed to stratify children based on their ability to respond to available treatment; however, the potential implementation of the LDT may make effective communication challenging since it can potentially remove the option for curative treatment in those children identified as non-responders, i.e. those with a catastrophic diagnosis.
We solicited the perspectives of parents of children with difficult-to-treat brain cancer on communication preferences surrounding the potential implementation of the LDT in standard care using deliberative stakeholder consultations.
Eight bereaved parents of children who succumbed to difficult-to-treat brain cancer, and four parents of children currently undergoing treatment for similar cancers attended separate small-group deliberative consultations - a stakeholder engagement method that enables the co-creation of recommendations following the consideration of competing arguments and diverse opinions of parents with different experiences. In the small-group consultations (Phase I), parents discussed four questions about potential communication issues that may arise with the LDT in practice. In Phase II, a total of five parents from both stakeholder groups (4 bereaved and 1 in current treatment) attended a consultation, known as the 'mixed' consultation, with the purpose of co-developing concrete recommendations for implementation of the LDT.
Explaining the risks, benefits, and accuracy of the LDT were considered essential to parents. Once an LDT-based diagnosis/prognosis can be made, parents valued honesty, empathy, and clarity in communication. Parents also requested that all results and treatment options be presented to them in measured doses, and in an unbiased manner over the course of several meetings. This communication strategy allowed sufficient time to understand and accept the diagnosis/prognosis, particularly if it was catastrophic. Continuous access to the appropriate psychological and social support or counselling at and post-diagnosis was also strongly recommended.
Deliberants co-created family-centered recommendations surrounding communication issues of the LDT, providing guidance to pediatric oncologists that could implement the test in practice.
有效的沟通对于支持临床决策是儿科癌症护理体验的核心。一种新的实验室衍生的药物遗传学检测（LDT）已经开发出来，可以根据儿童对现有治疗的反应能力对其进行分层，以诊断难以治疗的脑癌；然而，LDT 的潜在实施可能会使沟通变得具有挑战性，因为它可能会消除那些被认为是无反应者（即患有灾难性诊断的儿童）的治愈性治疗选择。
我们通过征求患有难以治疗的脑癌儿童的父母的意见，利用深思熟虑的利益相关者协商，了解他们对 LDT 在标准护理中实施的沟通偏好。
八位因难以治疗的脑癌而去世的儿童的父母和四位目前正在接受类似癌症治疗的儿童的父母分别参加了小型小组审议性协商——这是一种利益相关者参与方法，可在考虑到竞争论点和不同经验的父母的不同意见后，共同制定建议。在小型小组协商（第一阶段）中，父母讨论了四个关于在实践中可能出现的与 LDT 相关的潜在沟通问题的问题。在第二阶段，总共五位来自两个利益相关者群体（4 位失去亲人的和 1 位正在接受治疗的）参加了一次协商，称为“混合”协商，目的是共同制定实施 LDT 的具体建议。
解释 LDT 的风险、收益和准确性被认为对父母至关重要。一旦可以做出基于 LDT 的诊断/预后，父母就重视沟通中的诚实、同理心和清晰。父母还要求以均衡的方式，在几次会议中，向他们客观地呈现所有的结果和治疗选择。这种沟通策略为他们提供了足够的时间来理解和接受诊断/预后，特别是如果是灾难性的。在诊断时和诊断后还强烈建议他们持续获得适当的心理和社会支持或咨询。
深思熟虑的利益相关者共同制定了围绕 LDT 沟通问题的以家庭为中心的建议，为儿科肿瘤学家提供了在实践中实施该检测的指导。
