PDF(Pubmed)
Abstract：
As childhood cancer treatments have improved to include new and innovative agents, the need for more advanced monitoring of their long-term effects and related research has increased. This has resulted in a need for evidence-based research methodologies for the longitudinal care of childhood cancer patients treated with targeted agents and immunotherapies. The rationale for this pilot study was to determine the feasibility and acceptability of a data capture methodology for pediatric, adolescent, and young adult cancer patients treated with targeted agents and immunotherapy as there is little research to inform this delivery of care. Data were collected from thirty-two patients and two providers for descriptive statistics and thematic analyses. Feasibility was characterized by expected participant attrition. Key drivers of acceptability were (1) providers\' language and clarity of communication and (2) convenient participation requirements. Long-term follow-up research practices developed with input from key stakeholders, including patients, caregivers, and providers, can lead to acceptable and feasible research protocols that optimize successful participant recruitment. These evidence-based research practices can result in high participant satisfaction and can be implemented as program development initiatives across centers caring for childhood cancer survivors.
摘要：
随着儿童癌症治疗的改进，包括新的和创新的药物，对其长期影响和相关研究的更高级监测的需求增加了。这导致需要基于证据的研究方法来纵向护理用靶向药物和免疫疗法治疗的儿童癌症患者。这项初步研究的理由是确定儿科数据捕获方法的可行性和可接受性，青春期,以及接受靶向药物和免疫疗法治疗的年轻成年癌症患者，因为很少有研究来告知这种护理。从32名患者和2名提供者收集数据用于描述性统计和主题分析。可行性的特点是预期的参与者减员。可接受性的主要驱动因素是（1）提供者的语言和沟通的清晰度以及（2）方便的参与要求。在关键利益相关者的投入下制定的长期后续研究实践，包括患者,看护者,和提供者，可以导致可接受和可行的研究协议，优化成功的参与者招募。这些基于证据的研究实践可以带来很高的参与者满意度，并且可以作为照顾儿童癌症幸存者的中心的项目发展举措来实施。
