We searched PubMed and the Cumulative Index to Nursing and Allied Health Literature using the terms “cancer” or “neoplasm”, “survivor”, “preferences”, and “needs” related to human beings Only articles published in English were considered with a focus on articles from the past 5 years (2011–16). Searches of the articles' reference lists also identified additional articles that were included.
SeriesDefining cancer survivors, their needs, and perspectives on survivorship health care in the USA
Introduction
Much has changed in the specialty of oncology since the legislative passage of the National Cancer Act in 1971. After 1971, prevention, early detection, treatment, and symptom management have all changed and improved. One of the biggest changes is the growing number of people living with or who have had cancer in the USA, from 3 million in 1971 to more than 15·5 million in 2016; by 2026, this number is estimated to reach 20·3 million.1 This increase has implications for the people who have been diagnosed with cancer and the health-care system in which they receive care. Cancer survivors living longer will be at higher risk of long-term and late effects, as well as developing new cancers. The supply of cancer specialists will not keep up with this demand.2 Our health-care system does not yet consistently support the delivery of coordinated care between primary care and oncology specialists. This lack of support will be especially important given that the average number of comorbid conditions among survivors is now five.3 In this first paper in the Series on cancer survivorship in the USA, we define the term cancer survivor, discuss survivors' ongoing needs and preferences for care over time, and address the implications for delivering coordinated cancer care.
Section snippets
Definition of cancer survivors
The definition of the concept of people living with and beyond cancer as cancer survivors was first used in the mid-1980s by Fitzhugh Mullan in a New England Journal of Medicine article entitled “Seasons of Survival” in 1985.4 He identified three phases of survivorship: acute, defined as the diagnosis and treatment of cancer; extended, defined as the period following treatment; and permanent, survivorship as roughly equivalent to cure. In 1986, Mullan and a group of cancer survivors and
Survivors' needs
The medical and psychological concerns of survivors have been described in the seminal 2005 Institute of Medicine report From Cancer Patient to Cancer Survivor: Lost in Transition.7 These concerns include the effect of cancer and its treatment on quality of life (physical, psychological, social, and spiritual wellbeing; panel 2 identifies a conceptual framework of quality of life and the common issues that survivors might face in each of these domains);12 dealing with long-term and late effects
Survivors' preferences and perspectives for post-treatment care
Survivors are followed by their oncology team for varying amounts of time after treatment ends. Many survivors prefer to speak with their oncologists about cancer-related issues, although they still want their primary care provider (PCP) to be informed and involved in their care.47 Many want their PCP to provide support and to help with medical issues, especially in providing information about their cancer, fears of recurrence, recovery, and adjusting to life after treatment.48
Several studies
Care communication and coordination
Coordination of care between specialists and PCPs is necessary to ensure that survivors' health needs are met during and after treatment.13, 56, 57, 58 For example, if survivorship needs are not anticipated at the start of treatment, it might be difficult to address some of these needs at a later timepoint (eg, fertility issues or the risk of long-term side-effects). However, survivors, PCPs, and oncologists differ with regard to whom they want to deliver cancer-related and non-cancer-related
Existing programmes
A 2013 Institute of Medicine report13 identified the growing need for survivorship and palliative care, along with the need to address issues related to the coordination and organisation of the delivery of cancer care. The existing cancer care delivery system for survivors highlights several issues that contribute to less than ideal cancer survivorship care including: fragmentation of care delivery; PCPs feeling like they are out of the loop; lack of role clarity about who can most effectively
Bridging the gap
Much like planning for discharge at the time of hospital admission, oncologists and other members of the cancer care team should begin planning for patients who are receiving treatment with curative intent to transition back to their PCPs. Ideally, these transitions should begin during treatment planning, and include keeping PCPs informed in writing about what is happening to their patients, as well as attention to the need to continue to deliver non-cancer-related health care throughout the
Implications for delivery of coordinated care
Survivors want to receive care from clinicians with the knowledge to address the issues related to their cancer and its treatment. Over time, this care should shift from mainly an oncology to a primary care focus based on survivors' needs (figure 2). A more detailed risk-based model has been proposed by McCabe and Jacobs.61 We predict that survivors' preferences will shift as our cancer care delivery system progresses. We will need to do a better job from time of diagnosis and at times of
Search strategy and selection criteria
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