What do adolescents and young adults want from cancer resources? Insights from a Delphi panel of AYA patients
What do adolescents and young adults want from cancer resources? Insights from a Delphi panel of AYA patients
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DOI：
10.1007/s00520-016-3396-7
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发表时间：
2017-01-01
影响因子：
3.1
通讯作者：
Zebrack, Brad
中科院分区：
文献类型：
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作者：
Cheung, Christabel K.;Zebrack, Brad
癌症治疗计划和社区支持组织正在越来越多地产生面向青少年和年轻成人患者（AYAs）的信息和支持资源;然而，缺乏有关用户对这些资源的偏好的系统性知识。本研究的主要目的是从知情的AYA癌症患者中获得发现，资源开发人员可以使用这些发现来创建符合AYA表达的信息和支持偏好的产品。利用修改后的德尔菲技术，AYA癌症患者确定了最佳AYA癌症护理的障碍，满足他们需求的癌症资源，以及他们认为有用的癌症资源的特定特征。德尔菲小组由21名年龄在18-39岁之间的患者组成，他们被诊断患有15-39岁之间的癌症，并且在研究时不超过8年的癌症治疗。调查数据在2015年6个月的时间里连续收集了三轮，结果表明，AYA患者更喜欢减少孤独感的资源，创造社区或归属感，并提供与其他AYA患者见面的机会。在获得最佳癌症护理的最大障碍中，AYA发现缺乏专门从事AYA护理的癌症护理提供者，缺乏与AYA患者社区的联系，以及他们自己缺乏驾驭卫生系统的能力。参与者还描述了癌症信息和支持性护理资源的各个方面，他们认为这些信息和资源可以解决AYAs的问题。从这项研究中获得的信息将有助于癌症信息和支持资源的开发人员更好地接触到他们的目标受众。从AYA癌症患者的角度来看，最佳的癌症护理和信息和支持资源的利用需要癌症支持计划促进AYA患者之间有意义的联系。结果还表明，患者资源应配备AYAs必要的实用知识和技能，以浏览卫生系统和倡导自己。鉴于患者对社交媒体的兴趣，未来的研究应进一步研究优化在线资源，以服务于AYA癌症人群。
Cancer treatment programs and community-based support organizations are increasingly producing information and support resources geared to adolescent and young adult patients (AYAs); however, systematically-derived knowledge about user preferences for these resources is lacking. The primary purpose of this study was to generate findings from informed AYA cancer patients that resource developers can use to create products consistent with AYAs' expressed preferences for information and support.Utilizing a modified Delphi technique, AYA cancer patients identified barriers to optimal AYA cancer care, cancer resources that address their needs, and specific characteristics of cancer resources they find helpful. The Delphi panel consisted of a convenience sample of 21 patients aged 18-39 years, who were diagnosed with cancer between ages 15-39 and were no more than 8 years out from cancer treatment at the time of the study. Survey data were collected in three consecutive and iterative rounds over the course of 6 months in 2015.Findings indicated that AYA patients prefer resources that reduce feelings of loneliness, create a sense of community or belonging, and provide opportunities to meet other AYA patients. Among the top barriers to optimal cancer care, AYAs identified a lack of cancer care providers specializing in AYA care, a lack of connection to an AYA patient community, and their own lack of ability to navigate the health system. Participants also described aspects of cancer information and supportive care resources that they believe address AYAs' concerns.Information derived from this study will help developers of cancer information and support resources to better reach their intended audience. From the point of view of AYA cancer patients, optimal cancer care and utilization of information and support resources requires that cancer support programs foster meaningful connections among AYA patients. Results also suggest that patient resources should equip AYAs with practical knowledge and skills necessary to navigate the health system and advocate for themselves. Given patient interest in social media, future research should further investigate optimizing online resources to serve the AYA cancer population.