Cancer care delivery is being shaped by growing numbers of cancer survivors coupled with provider shortages, rising costs of primary treatment and follow‐up care, significant survivorship health disparities, increased reliance on informal caregivers, and the transition to value‐based care. These factors create a compelling need to provide coordinated, comprehensive, personalized care for cancer survivors in ways that meet survivors’ and caregivers’ unique needs while minimizing the impact of provider shortages and controlling costs for health care systems, survivors, and families. The authors reviewed research identifying and addressing the needs of cancer survivors and caregivers and used this synthesis to create a set of critical priorities for care delivery, research, education, and policy to equitably improve survivor outcomes and support caregivers. Efforts are needed in 3 priority areas: 1) implementing routine assessment of survivors’ needs and functioning and caregivers’ needs; 2) facilitating personalized, tailored, information and referrals from diagnosis onward for both survivors and caregivers, shifting services from point of care to point of need wherever possible; and 3) disseminating and supporting the implementation of new care methods and interventions.
Rising Numbers of Cancer Survivors
More than 1.7 million Americans are expected to be diagnosed with cancer in 2018 (Fig. 1).1, 2 This number of new cancer cases in America continues to increase each year despite declining incidence rates in men and stable rates in women3 as a result of population growth and aging. The rising cancer case burden as well as advances in early detection and treatment4 all contribute to an unprecedented and continuing rise in the number of Americans living with a history of cancer, a group referred to as cancer survivors. Although 5‐year survival rates vary substantially by type of cancer (Fig. 1),1, 2 many survivors are living years beyond their disease. Of the nearly 15.5 million cancer survivors, 67% were diagnosed 5 or more years ago, and 17% were diagnosed 20 or more years ago.4
Figure 1
Age Distribution (%), Median Age at Diagnosis, 5‐Year Relative Survival, and Estimated Number of New Cases by Cancer Type. Cancer types are ranked in descending order of median age at diagnosis. Age distribution and median age at diagnosis are based on patients who were diagnosed during 2011 through 2015 in the Surveillance, Epidemiology, and End Results (SEER) program. Five‐year relative survival is based on patients who were diagnosed in the SEER program during 2008 through 2014, all of whom were followed through 2015. An asterisk indicates that a new case estimate includes other biliary sites. Data sources: Age distribution, median age at diagnosis, and 5‐year relative survival: Noone AM, Howlader N, Krapcho M, et al, eds. SEER Cancer Statistics Review, 1975‐2015. Bethesda, MD: National Cancer Institute; 2018.2 Estimated new cancer cases in 2018: Siegel RL, Miller KD, Jemal A. Cancer statistics, 2018. CA Cancer J Clin. 2018;68:7‐30.1
Demographic shifts are expected to shape the numbers of survivors dramatically in the near future. With population aging and growth, the number of American cancer survivors is projected to rise to 20.3 million in 2026 and to 26.1 million by 2040.5 The aging US population also will result in increases in the number of older cancer survivors: 73% of survivors will be age 65 years or older by 2040, up from 62% in 2016.5 The increase in the number of older adults with cancer has implications for the delivery of oncology and posttreatment follow‐up care, because older adults are likely to need management of multiple comorbid conditions concurrent with their cancer‐specific care.5
The sociodemographic composition of survivors is expected to change as well. The number of racial/ethnic minority individuals in the United States is projected to rise from 125 million in 2016 to 157 million in 2030, relative to flat numbers for the non‐Hispanic white population.6 Correspondingly, the annual number of new cancer cases diagnosed among individuals from racial/ethnic minority groups is expected to rise rapidly compared with the case burden in non‐Hispanic whites.7 Survivors, including the socioeconomically disadvantaged, some racial/ethnic minorities, the uninsured/underinsured, immigrants, and sexual minorities, face poorer health outcomes because of informational, structural, financial, and other barriers to appropriate, timely, and effective cancer treatment; suboptimal patient‐provider communication; inadequate supportive resources; poor access to comprehensive cancer centers; and low access to and awareness of health information resources.8 Although disparities, such as those in cancer mortality by race/ethnicity, have narrowed for older adults who presumably have access to medical care through Medicare, the mortality gap remains high for racial/ethnic minorities younger than 65 years.1 Future demographic shifts will heighten the need for focused strategies that effectively address the unique needs of underserved survivors, especially those younger than 65 years, who are highly vulnerable to poor outcomes.2
The Growth of Cancer Survivorship Research
The increasing number of survivors who live longer after their diagnosis has spurred growing interest in survivorship research describing and addressing their ongoing issues and health care needs and the needs of informal cancer caregivers.
Survivorship research has shown that the time from diagnosis through initial treatment is especially stressful for survivors. Pain, fatigue, and emotional distress are the most common symptoms across cancer diagnoses9 along with impaired physical functioning and reduced quality of life.9 Research has documented the impact of cancer and treatment on 4 domains of survivors’ well‐being, including physical, emotional, social, and spiritual.9 Physical well‐being is affected by symptoms and side effects, such as pain, fatigue, and poor sleep quality, that affect the ability to perform normal daily activities. Emotional, or psychological, well‐being is affected by symptoms of anxiety, depression, fear of cancer recurrence, and problems with memory and concentration. Social well‐being is affected by changes in relationships with family members and friends, including intimacy and sexual functioning, and by employment, insurance, and financial concerns. Spiritual well‐being is affected by facing uncertainty about one’s future health or drawing meaning from the cancer experience. Survivors who were diagnosed during childbearing years face additional concerns about balancing and timing their desire to preserve fertility with their decision making about cancer treatment.10
Problems in these quality‐of‐life domains interact to impair survivors’ ability to function sufficiently to participate fully in work and life roles: 37% of adult survivors report restrictions in performing basic activities of daily living, and 55% report restrictions in performing instrumental activities of daily living (those activities that allow them to live independently).11 The impact of cancer is worse for older survivors, among whom 64% report functional limitations that affect their mobility or activities of daily living.12Socioeconomically disadvantaged survivors are particularly vulnerable to poor quality of life, because poor access to health care hinders access to symptom management and receipt of effective treatment.13, 14 When left unaddressed, these problems lead to reduced work productivity,15, 16 quality of life,12, 17 and overall survival.18 Survivors who are coping with advanced cancer19–22 report ongoing symptom burden and poor physical functioning that affects quality of life.23, 24 This research has led to recommendations to facilitate referrals for early access to palliative care25 and rehabilitation care26, 27 that can improve quality of life.
Those survivors who transition out of active treatment frequently feel unprepared for what they will face.28, 29 Peer modeling and psychoeducation have been shown to help manage symptoms for survivors who feel unprepared for reentry.30 However, a minority of survivors report chronic physical and emotional symptoms and functional problems9, 31: over 25% of survivors report high symptom burden a year after diagnosis.31 Fear of cancer recurrence, the most common concern of cancer survivors,9 can be sufficiently severe to require clinical intervention and can negatively influence health behaviors and health care utilization.32, 33Other symptoms include anxiety, fatigue, lymphedema, depression, pain, impaired cognition, and loneliness.9, 31, 34 Although 25% of all cancer survivors report decreased quality of life because of physical problems, and 10% report decreased quality of life because of emotional problems,35 there are significant disparities in the burden of these problems. . Survivors with lower income, less education, or more comorbid conditions; those who are unemployed; and those who are uninsured or underinsured have higher ongoing symptom burden.31 Survivors who are from racial/ethnic minority groups or are socioeconomically disadvantaged and those with more comorbid conditions report worse quality of life.36, 37
In addition to ongoing symptoms and functional impairment after the successful completion of anticancer treatment, survivors are at increased risk for several cancer‐related issues. For many cancer survivors, the initial course of treatment is successful, and the cancer never recurs.4 However, many survivors are at increased risk of developing new cancers compared with those who were never diagnosed with cancer,38 depending on first primary cancer site, treatment type(s), and individual factors (eg, age at diagnosis), personal or family medical history, genetic predisposition (eg, Lynch syndrome), smoking status, or obesity.38 Second and subsequent primary cancers are of particular concern among childhood and adolescent cancer survivors because of their longer life expectancy and the effects of treatments used for common childhood cancer types on developing organs and tissues. For example, in one large US cohort study of childhood cancer survivors who survived at least 5 years, 7.9% developed a new cancer within the first 30 years after initial cancer diagnosis.39 In addition to new cancers, survivors also may experience late effects of treatment that do not appear until many years later, such as bone loss, endocrine or cardiovascular dysfunction, musculoskeletal problems, and others.9 For example, adult breast cancer survivors are commonly treated for several years with hormonal therapies, which are associated with hot flashes and a long‐term increased risk of bone loss, osteoporosis, fractures, joint pain, blood clots, and stroke as well as endometrial cancer.40 Prostate cancer survivors often receive long‐term androgen deprivation therapy, which causes hot flashes, muscle atrophy, sarcopenia, and cognitive difficulty; increases risk of the metabolic syndrome and diabetes; and substantially increases risk of cardiovascular disease.41 Chemotherapy, including anthracyclines or chest radiation, can increase risk of cardiovascular disease in survivors of several cancers.42
The cumulative impact of these chronic and late effects of cancer may represent an acceleration of normal aging or the accumulation of comorbid diseases at an earlier age than their peers without a cancer history.43, 44 A significant number of long‐term survivors (5 years or more), especially those who had more invasive and aggressive treatments, report lower overall physical well‐being than their peers.45 Over 50% of adult cancer survivors46and 65% of older adult survivors12 experience persistent functional limitations many years beyond treatment. These decrements in functioning affect survivors’ ability to work47–51and increase health care utilization and costs.52 …
Meeting the unique and complex needs of the growing cancer survivor population and their caregivers is a challenge that must be met by reforming our health care systems and better leveraging our community and public health systems. Care for survivors is not one‐size‐fits‐all; rather, care must be personalized to meet survivors’ needs. Shortages in oncologists, primary care providers, and nurses,131–134 coupled with the rising numbers of cancer survivors (particularly older adult and racial/ethnic minority survivors) and the rising costs of cancer and survivorship care,135, 136 are taxing US health care delivery systems. With the transition from fee‐for‐service to value‐based care, these factors create a compelling need to provide coordinated, comprehensive, high‐quality care for cancer survivors and support for their caregivers in ways that meet survivors’ and caregivers’ unique needs while minimizing the impact of provider shortages and controlling costs to health care systems, survivors, and families. Coordinated efforts in practice, research, education, and policy in support of the 3 priorities presented here—1) implementing the routine assessment of survivors’ needs and functioning and of caregivers’ needs; 2) facilitating personalized, tailored information and referrals from diagnosis forward for survivors and caregivers, shifting care from point of care to point of need wherever possible; and 3) disseminating and supporting the implementation of new care methods and interventions—have the potential to dramatically and equitably transform the health and well‐being of cancer survivors and their caregivers.
The cancer care community is already mobilized for change and has demonstrated an increased commitment to improve care for all survivors. Work already has begun to enact these strategies through multistakeholder efforts and through the independent acts of many organizations. To accelerate progress in using ePROs to assess survivors’ needs and functioning, in 2017, the American Congress of Rehabilitation Medicine, the NCI, and 25 stakeholder organizations from all areas of patient care worked to drive consensus about the best measures of symptoms and function that could trigger a referral to supportive services. The report from this effort lists several appropriate measures and outlines steps needed to implement a process for the assessment and referral of survivors across oncology settings (unpublished results).
The ACS and the Oncology Nursing Society continued this work by hosting a roundtable meeting of over 40 stakeholder groups in March 2018 to catalyze the development of digital tools to mitigate the adverse effects of cancer and its therapy (facilitating survivor and caregiver assessment, appropriate referrals, and survivors’ and caregivers’ self‐management). Ongoing work from this effort will develop use cases in key areas of care that have the potential to equitably transform outcomes. The use cases will provide the basis to generate a model simulating the effects of this shift in care on survivors’ outcomes, clinical efficiency, health care utilization, and costs. The group also highlighted the need for professional societies to collaboratively develop and harmonize ePRO‐compatible symptom management guidelines with risk‐stratified algorithms that include appropriate self‐management materials for survivors and caregivers as well as clinical treatment pathways for those who need moderate‐touch and high‐touch interventions.
One example of ongoing work to improve the measurement of the impact of cancer on population health is the NCI’s partnership with the Department of Energy to enable the acquisition of more detailed clinical data from health care documents and improve the overall quality and efficiency of data abstraction for cancer registries and cancer surveillance.137 Once established, these efforts could be extended to include the surveillance of cancer impact through ePROs, which also would allow for the identification and tracking of disparities.
Several efforts also have worked toward the goal of building risk‐stratified cancer follow‐up care in the United States. The ACS and the ASCO held a summit in January 2018 to outline a strategy of research, clinical care, and policy strategies for implementing personalized, tailored, risk‐stratified follow‐up care in the United States. In September 2018, the ACS held a follow‐up meeting to identify and prioritize the specific research needed to create and implement risk‐stratified models for survivorship care in the United States. Finally, an NCI meeting planned for late 2018 will identify quality metrics for survivorship care. These measures can be incorporated into emerging models that link payment to value and quality. If the nation is to strive for improved quality, then measures of that quality must be defined, tested, validated, and widely incorporated into emerging delivery system models.
Each of these organizations and the many national leaders committed to improving care should continue to explore the most effective ways to work together on these and other strategies to ensure that efforts are organized, sustained, and adequately funded. Greater attention and definition must be given to the concept of cancer as a chronic disease with long‐term risks as well as diverse adverse effects. Our health care and public health systems must adapt to focus on this emerging conceptualization. Investing in new cancer treatments is vital; these new treatments have contributed to cancer becoming a chronic problem in which more survivors move beyond their original disease but then must cope with new risks and symptoms. However, also failing to invest research funds adequately in addressing the long‐term problems confronting survivors and caregivers is unethical. The portfolio of research funding must reflect the balance of the full spectrum in cancer control, from prevention, to early detection and diagnosis, to treatment, survivorship, and end of life.
Finally, this blueprint has identified numerous factors that correlate with disparate health outcomes between different populations and communities. Many of these factors relate to the social determinants of disease, such as income inequality, disproportionate access to education and health care, and discrimination. We need to acknowledge that certain racial and ethnic groups, neighborhoods, and individuals with lower incomes have different (or additional) barriers preventing them from receiving the care they need and from being as healthy as they want to be. Overcoming these barriers will require tailored approaches based upon the needs of these populations if we are to improve their cancer outcomes. Bringing the voices of cancer survivors and their caregivers into a national dialogue about these root causes of disease and disparities can be a powerful way to mobilize national action and create effective solutions.
Disclosures
All authors are employed by the American Cancer Society, which receives grants from private and corporate foundations, including foundations associated with companies in the health sector for research outside the submitted work. Tenbroeck G. Smith receives partial salary support from a Patient‐Centered Outcomes Research Institute (PCORI) grant funding a pragmatic trial of the effectiveness of electronic patient‐reported outcomes in cancer care. The remaining authors are not funded by or key personnel for any of these grants, and their salaries are funded solely through American Cancer Society funds. No grant support was used to support this article.
