J Natl Compr Canc Netw. 2018 Jul;16(7):839-844. doi: 10.6004/jnccn.2018.7019.
Cancer survivorship presents unique medical, psychosocial, and logistical challenges for survivors, their caregivers, and clinicians. NCI-designated Comprehensive Cancer Centers (CCCs) serve a unique role in the delivery of cancer care because they not only provide care but also serve as a model for community oncologists and clinics through the development and dissemination of standards of care. Survivors, their caregivers, and clinicians look to CCCs to provide information about how to navigate the transition from active to posttreatment care. However, there is wide variability in the types of resources CCCs make available on their websites. The goal of our assessment was to understand the types of posttreatment survivor-specific resources CCCs are providing on their website. We analyzed the websites of the 47 CCCs to evaluate survivor-specific resources around the 4 components of survivorship care described by the Institute of Medicine guidelines for survivorship care plans: surveillance, prevention, intervention, and coordination. Of the 47 CCCs, 74.5% (n=35) had discoverable survivor-specific services on their websites. Despite our inclusive approach to coding, few websites contained extensive information targeted at survivors, their caregivers, or clinicians. Only the coordination and intervention elements were discussed by at least half of the CCCs. From the vantage point of cancer survivors, their lay caregivers, loved ones, or clinicians, there is limited information about survivor-specific services on the websites of the 47 CCCs. This dearth of information translates into substantial work for these groups to find the resources they may need. The CCCs have an opportunity to serve as information hubs and to lessen the amount of work associated with survivorship. As models of cancer care delivery, the CCCs can also set the standard for community oncologists and clinics for delivery of care that improves the quality of life for survivors.
癌症生存者面临着独特的医疗、心理社会和后勤挑战,包括生存者、他们的照顾者和临床医生。NCI 指定的综合癌症中心 (CCCs) 在癌症护理的提供方面发挥着独特的作用,因为它们不仅提供护理,而且还通过制定和传播护理标准,为社区肿瘤学家和诊所提供模式。生存者、他们的照顾者和临床医生希望 CCC 能够提供有关如何从积极治疗过渡到治疗后护理的信息。然而,CCCs 在其网站上提供的资源类型存在很大差异。我们评估的目的是了解 CCC 网站上提供的针对特定生存者的资源类型。 我们分析了 47 个 CCC 的网站,以评估围绕医学研究所生存护理计划指南中描述的生存护理计划的 4 个组成部分(监测、预防、干预和协调)提供的特定生存者资源。在 47 个 CCC 中,有 74.5%(n=35)的网站上有可发现的针对特定生存者的服务。尽管我们采用了包容性的编码方法,但很少有网站包含针对生存者、他们的照顾者或临床医生的广泛信息。只有协调和干预元素被至少一半的 CCC 讨论。从癌症生存者、他们的非专业照顾者、亲人或临床医生的角度来看,关于特定生存者服务的信息在 47 个 CCC 的网站上非常有限。这种信息的缺乏意味着这些群体需要大量的工作来找到他们可能需要的资源。 CCC 有机会成为信息中心,并减少与生存相关的工作。作为癌症护理提供的模式,CCCs 还可以为社区肿瘤学家和诊所设定标准,提供改善生存者生活质量的护理。