Improvements in early detection, treatment, and follow-up, combined with an aging population, have led to an increase in the number of people surviving cancer.1 Recently, Bluethmann et al2 projected that there will be 26.1 million US cancer survivors by 2040. Survivorship carries with it unique medical, psychosocial, and logistical challenges, which may include health problems arising from the treatments themselves, feelings of loss and anxiety about the future, or the financial impact of expensive cancer treatments.1,3 As the population of cancer survivors grows, clinicians are grappling with how best to meet these needs, and survivors are looking for information about how to transition from active to posttreatment care.
In response to increasing survivorship, NCI-designated Comprehensive Cancer Centers (CCCs) will be called on to take the lead for community providers and to act as sources of information for survivors, their caregivers, and clinicians as they navigate the next phase of care. Designation as a CCC requires evidence of the provision of exceptional care and conduct of translational research activities in the basic, clinical, and population sciences, with a special emphasis on ensuring that discoveries have a positive impact on the CCC's catchment area. CCCs occupy a unique space in the field of cancer care delivery because they provide care to patients while also engaging in cutting-edge research and, through organizations such as NCCN, developing and disseminating guidelines around standards of care. Although only a small percentage of survivors will receive their care at CCCs,3 community oncologists and clinics look to CCCs for such guidance.
Recent work by Leppin et al,4 Eschler et al,5 and Klasnja et al6 have described the enormous burden placed on patients and their caregivers during medical treatment, including finding information that they need to deal with their condition. CCCs are in a position to impact the lives of cancer survivors by minimizing the amount of information-seeking work patients and their loved ones must perform. Much of this information-seeking occurs online. According to the Pew Research Center's Internet & American Life Project, 72% of surveyed internet users have searched for health information online in the past year.7 Furthermore, in a review of the Health Information National Trends Survey (HINTS) data, Finney Rutton et al8 found that survivors searched for cancer information more frequently than those with a family history of cancer and those with no history of it, with 44% starting with their providers and 36% starting with the internet.
Because of their position as leaders in the delivery of cancer care, CCCs will be expected to provide accessible, usable, comprehensive online resources for survivors and their caregivers. But are they doing so? To answer this question, we evaluated the information resources available to survivors by assessing, from the point of view of survivors and/or caregivers, what types of resources could be found on the CCC websites to help survivors manage their posttreatment lives.
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BluethmannSMMariottoABRowlandJH. Anticipating the “silver tsunami”: prevalence trajectories and comorbidity burden among older cancer survivors in the United States. Cancer Epidemiol Biomarkers Prev2016;25:1029–1036.
Institute of Medicine and National Research Council. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press; 2005.
LeppinAMontoriVGionfriddoM. Minimally disruptive medicine: a pragmatically comprehensive model for delivering care to patients with multiple chronic conditions. Healthcare (Basel)2015;3:50–63.
EschlerJMeasPLLozanoP. Integrating the patient portal into the health management work ecosystem: user acceptance of a novel prototype. AMIA Annu Symp Proc2016;2016:541–550.
KlasnjaPHartzlerACUnruhKTPrattW. Blowing in the wind: unanchored patient information work during cancer care. Proc SIGCHI Conf Hum Factor Comput Syst2010;2010:193–202.
FoxFDugganM. Health Online 2013. Pew Research Center: Internet & Technology. Available at: http://www.pewinternet.org/2013/01/15/health-online-2013/. Accessed June 13 2018.
Finney RuttenLJAgunwambaAAWilsonP. Cancer-related information seeking among cancer survivors: trends over a decade (2003–2013). J Cancer Educ2016;31:348–357.
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Cancer Program Standards: Ensuring Patient-Centered Care. 2016 Edition. Available at: https://www.facs.org/~/media/files/quality%20programs/cancer/coc/2016%20coc%20standards%20manual_interactive%20pdf.ashx. Accessed June 13 2018.