Department of Pediatrics, Emory University, Children's Healthcare of Atlanta, Atlanta, Georgia.
Pediatr Blood Cancer. 2014 Oct;61(10):1846-51. doi: 10.1002/pbc.25130. Epub 2014 Jun 29.
A high proportion of pediatric cancer patients are now surviving into adulthood, but are at increased risk for late morbidity and premature mortality related to their diagnosis and therapeutic exposures. Little is known about the potential success of recruiting adult survivors of childhood cancer into research projects that would require a risk-based health evaluation within a clinical setting.
Pediatric cancer survivors and siblings eligible for the current study were Childhood Cancer Survivor Study participants who lived within 100 miles of one of five Consortium for Pediatric Intervention Research institutions, regardless of where they were initially diagnosed and treated. A short survey was mailed to 829 survivors and 373 siblings to identify factors that predict interest, potential barriers, and motivators, to participation in research including a risk-based clinical evaluation.
Overall, 92% of survivors responding to the survey were very interested/interested in participating in a research study requiring a visit to a local hospital clinic. Siblings of survivors were less interested than survivors in participating in such a study, with only 78% indicating that they were very interested/interested. Potential motivators to participation included visiting their treating hospital and receiving health information. The primary barrier to participation was related to taking time off from work.
This study demonstrates that a subgroup of survivors would be willing to return to a long-term follow-up center to participate in intervention-based research. Identified motivating factors and perceived barriers need to be considered in determining the feasibility, design and execution of future research.
现在有很大一部分儿科癌症患者已经成年，但他们因诊断和治疗暴露而面临更高的晚期发病和过早死亡风险。对于招募儿科癌症成年幸存者参与需要在临床环境中进行基于风险的健康评估的研究项目，人们知之甚少。
有资格参加当前研究的儿科癌症幸存者和兄弟姐妹是居住在距离五个儿科干预研究联盟机构之一 100 英里以内的儿童癌症幸存者研究参与者，无论他们最初在哪里被诊断和治疗。向 829 名幸存者和 373 名兄弟姐妹邮寄了一份简短的调查，以确定预测他们对参与研究的兴趣、潜在障碍和动机的因素，包括基于风险的临床评估。
总的来说，对调查做出回应的 92%的幸存者非常有兴趣/有兴趣参与需要前往当地医院诊所的研究。幸存者的兄弟姐妹比幸存者对参与此类研究的兴趣较小，只有 78%的人表示非常有兴趣/有兴趣。参与的潜在动机包括访问他们的治疗医院和获得健康信息。参与的主要障碍与从工作中抽出时间有关。
本研究表明，一小部分幸存者愿意返回长期随访中心参与基于干预的研究。在确定未来研究的可行性、设计和执行时，需要考虑确定的激励因素和感知障碍。
