Cancer Care: Beyond Survival – The Lancet
Ring the bell at the end of cancer treatment. Receive the “green light” at the last visit to the clinic. This idea – of a clear end point for cancer treatment, after which normalcy resumes – is prevalent in our assumptions about what successful cancer treatment is, and can be a powerful motivation for people undergoing a treatment, as well as for those who provide and seek it. But for most cancer survivors, the reality is not that simple. At least two-thirds of cancer survivors, whether cured or in remission, have physical, psychological and support needs that are not well managed and may not even be recognized by current models of care. A three-part series published in The Lancet today looks at the growing experience of cancer survivorship.
The authors describe the long-term effects and risks in patients who have had cancer, and the management of the most common clinical problems, including managing the increasing number of people being treated for cancer during the childhood and adolescence. Physical issues such as pain, fertility issues, and health risks from treatment are common. Long-term psychosocial effects related to sleep, fatigue, cognitive impairment, fear of recurrence, and concerns about relationships, finances, work, and education are also prevalent and under-reported. For people who had cancer during childhood or adolescence, survival can last for decades, and although the risk of recurrence may decrease over time, long-term treatment-related effects can accumulate. They may also have to deal with interrupted physical, emotional, social or educational development and difficulties associated with the transition to adult care. The experiences and needs of cancer survivors are diverse. Evidence shows that tailored interventions are more effective than generic interventions; however, such interventions are not well supported in oncology or primary care. A systematic but individualized approach that recognizes and supports complex medical, social and personal needs is needed.
The current model of cancer care, which emphasizes the acute active phase, serves patients poorly. Many survivors are released with continuing problems. The second article in the series by Michael Jefford and colleagues examines alternative models of care. They suggest that primary care-led models, care shared by oncologists and primary care providers, and nurse-led models are all supported by evidence as being safe, effective, sustainable, affordable and acceptable to patients. . The success of these alternative models, however, depends on clear communication and coordination between providers, to ensure that everyone providing care has the required knowledge and experience. The key requirement is to move from detecting recurrences and new cancers to a patient-centered model that identifies individual needs and risks, and that is sensitive and personalized enough to support survivors throughout life.
Improving the delivery of care requires a fundamental shift in our cancer control goals. Despite improvements in oncology research to better capture quality of life in patient outcomes, most studies still focus on survival endpoints. Cancer treatments are often toxic and adverse events, and long-term outcomes can be poorly described in many studies. The under-recognition of these issues contributes to the unmet needs of cancer survivors. Improved monitoring of longer-term function, psychosocial effects and costs, as well as patient involvement in research design and meaningful patient-centered outcome measures are needed. Similarly, at the population level, many national targets focus on cancer survival rates rather than more nuanced measures reflecting positive and negative survival experiences. As a result, policy makers often lack the data to make informed improvements to information systems, insurance or reimbursement programs, and national cancer control programs. Where resources are limited, survivorship is particularly overlooked and there is an urgent need for data on survivorship care available in low- and middle-income settings, and international collaboration on research and care delivery conducted locally.
With aging populations, more effective treatments and a greater focus on early cancer detection, there are now unprecedented numbers of cancer survivors. But many national cancer services and guidelines have yet to recognize that good cancer care goes far beyond diagnosis and treatment, even for those who are successfully treated. This series shows that, given the many advances in cancer care, our systems and our thinking must shift from surviving cancer to living and flourishing beyond.
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