Gwara Meghan, Smith Sharon, Woods Christine, Sheeren Elizabeth, Woods Hampton
International Children's Advisory Network, Hartford, Connecticut.
International Children's Advisory Network, Hartford, Connecticut; Connecticut Children's Medical Center, Hartford, Connecticut.
Clin Ther. 2017 Oct;39(10):1933-1938. doi: 10.1016/j.clinthera.2017.09.002. Epub 2017 Sep 22.
Pediatric youth advisory groups were created to provide insight and guidance to the clinical research community. Such efforts have become a priority and parallel the demand for patient-centered health care. While steps are being made to integrate the patient voice into research, there remains a lack of pediatric-specific engagement in the development of pharmaceuticals and in clinical research. For example, a significant number of children are still treated with medications that are not approved for use in this age group, due to a lack of clinical trials involving younger children and neonates. The American Academy of Pediatrics noted that physicians are faced with an ethical dilemma, as they must frequently either not treat children with potentially beneficial medications or treat them with medications based on adult studies or anecdotal empirical experience in children. By improving the approach to pediatric study design, indications for pediatric-specific therapies can be developed. We describe a structured organization with empowered youth and parents who are beginning to play a key role in the research process that suggests ways to improve pediatric research and for innovative medical products to be more "child friendly" and usable. We will also describe how investigators can engage the International Children's Advisory Network to obtain valuable youth perspectives on many aspects of clinical research and health care advocacy.
儿科青年咨询小组的设立旨在为临床研究界提供见解和指导。此类举措已成为优先事项，与以患者为中心的医疗保健需求并行。虽然正在采取措施将患者的声音纳入研究，但在药品研发和临床研究中仍缺乏针对儿科的参与。例如，由于缺乏涉及年幼儿童和新生儿的临床试验，大量儿童仍在使用未被批准用于该年龄组的药物进行治疗。美国儿科学会指出，医生面临着伦理困境，因为他们常常要么不给儿童使用可能有益的药物，要么根据成人研究或儿童的轶事经验用药。通过改进儿科研究设计方法，可以开发出儿科特定疗法的适应症。我们描述了一个由赋权的青年和家长组成的结构化组织，他们开始在研究过程中发挥关键作用，提出改进儿科研究的方法，使创新医疗产品更“儿童友好”且可用。我们还将描述研究人员如何与国际儿童咨询网络合作，以获取关于临床研究和医疗保健倡导诸多方面的宝贵青年观点。
