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Understanding and addressing global inequities in cancer survivorship care

Jacobsen, Paul B.*; Mollica, Michelle A.

Journal of Psychosocial Oncology Research and Practice: July 2019 - Volume 1 - Issue 1 - p e5
doi: 10.1097/OR9.0000000000000005
Commentary
Open

Cancer survivorship focuses on efforts to understand and address the health care needs of people diagnosed with cancer beyond the acute diagnosis and treatment phase. To date, work in this area has been concentrated in a limited number of high-income countries and has progressed to identifying and implementing effective models of survivorship care. The situation is likely quite different in low- and middle-income countries where awareness of and ability to address issues affecting cancer survivors may be limited. Four recommendations are offered for advancing cancer survivorship care more equitably across the globe: conduct research to better understand the current state of survivorship care in low-, middle-, and high-income countries; expand the number of national cancer control plans that address cancer survivorship; develop and disseminate resource-stratified guidelines for survivorship care; and form regional partnerships to improve survivorship care similar to those formed to improve palliative care.

Healthcare Delivery Research Program, National Cancer Institute, Bethesda, MD

Corresponding author. Address: 9609 Medical Center Drive, Bethesda, MD 20892. E-mail: address: paul.jacobsen@nih.gov (P.B. Jacobsen).

Sponsorships or competing interests that may be relevant to content are disclosed at the end of this article.

The views expressed are those of the authors and do not necessarily represent the official views of the National Cancer Institute (USA).

Both the authors contributed equally to the writing of this article.

Received May 29, 2019

Accepted May 31, 2019

This material is licensed under the terms of the Open Government Licence except where otherwise stated. To view this licence, visit http://www.nationalarchives.gov.uk/doc/open-government-licence/version/3 or write to the Information Policy Team, The National Archives, Kew, London, TW9 4DU, or email: psi@nationalarchives.gsi.gov.uk. http://www.nationalarchives.gov.uk/doc/open-government-licence/version/3

The number of people living globally with a cancer diagnosis is expected to rise dramatically in the coming years. The American Association for Cancer Research estimates that this number will have increased from 15.2 million new cases in 2015 to 24 million new cases in 2035.[1] Most of this increase is expected to occur in less developed as opposed to more developed countries.[1] Factors that likely contribute to the greater increase in less developed countries include systematic efforts to promote various forms of cancer screening and detection and the declines in other causes of mortality owing to improvements in the treatment of communicable diseases.

An important distinction can be drawn between the terms “cancer survivor” and “cancer survivorship.” The numbers cited above are for cancer survivors, which refer to individuals from the time of cancer diagnosis through the balance of their lives.[2] Cancer survivorship refers to efforts to understand and address the health care needs of a person with a history of cancer beyond the acute diagnosis and treatment phase.[2]

Of particular importance for cancer survivors is the transition period when active cancer treatment ends and post-treatment follow-up care should begin. In their landmark 2006 report, the US Institute of Medicine, now the National Academy of Medicine (NAM), identified this transition as critical for the future health and well-being of cancer survivors.[3] However, the report noted that many survivors become lost in the transition and do not receive adequate follow-up care. Among the major components of follow-up care identified in the NAM report are: surveillance for disease recurrence and new cancers; assessment with treatment or referral for persistent effects of cancer and its treatment (eg, sexual dysfunction); evaluation of the risk for and prevention of late effects (eg, cardiotoxicity); and promotion of healthy behaviors (eg, exercise, tobacco cessation). The report also recognized that the complex needs of cancer survivors necessitate comprehensive, coordinated care among oncology specialists, other specialty care providers, and primary care providers (PCPs).

Considerable progress has been made in several countries in advancing cancer survivorship care since the NAM report was published in 2006. Major accomplishments include the development of consensus- and evidence-based guidelines for survivorship care, the inclusion of survivorship care in many regional and national cancer control plans, increased support for research on cancer survivorship, and the development of educational programs and materials on cancer survivorship for health care providers and survivors.[4]

Efforts to improve the delivery of survivorship care focused initially on the development and implementation of survivorship care plans (SCPs). These plans are comprised of a summary record that includes important disease- and treatment-related information plus a care plan that addresses the principal components of follow-up care described above. The plans are intended to be distributed to the survivor as well as the providers (eg, PCPs) involved in follow-up care to promote care coordination. Although use of SCPs has been adopted in numerous oncology practices in several countries, there is limited evidence that delivery of SCPs alone yields improvements in quality of life or other patient-centered outcomes.[5,6] As a result, attention has shifted to the delivery of high-quality coordinated care, as well as the development and evaluation of different models of cancer survivorship care, to ensure that recommendations contained in SCPs are acted upon. Models of survivorship care describe the process for delivery of follow-up care, including what type of care is delivered, when, and by whom.[7] Examples include follow-up care delivered by the same team that provided active cancer treatment (ie, oncology specialist model), by specialists in survivorship issues (ie, multidisciplinary survivorship clinic model), and by both oncology specialists and PCPs (ie, shared care model). Evidence supporting the efficacy of these different models of survivorship care is limited,[4] and a consensus is emerging regarding the limitations of a “one-size-fits-all” approach to the delivery of post-treatment follow-up care.[8] Instead, there is interest in investigating the potential benefits of adopting a personalized approach in which survivors are triaged to different care pathways based on the complexity of their needs, the risks associated with their cancer diagnosis and previous treatment exposures, and the types of providers their follow-up care requires.[9] The development of this personalized approach is viewed as having the potential to improve upon current approaches that often lead to under- and over-utilization of care, poorly managed cancer- and treatment-related symptoms, and undue burden on the patient and health care delivery system.

To date, most of the work on advancing cancer survivorship care has been conducted in a limited number of high-income countries (eg, United States, United Kingdom, Netherlands, and Australia) as defined by the World Bank's method for classifying countries by gross national income.[10] For example, health care systems in several regions of the United Kingdom are actively engaged in implementing risk-stratified approaches to follow-up care for patients with many common cancers.[11] As work in these countries moves toward identification and implementation of effective and efficient models of survivorship care, the situation is likely quite different in low- and middle-income countries (LMICs). Awareness of long-term issues affecting cancer survivors may be limited in LMICs given that many patients are diagnosed with late-stage disease, have limited treatment options, and have limited life expectancy. However, when patients are treated with curative intent in LMICs, survivorship issues may be particularly salient. In many of these countries, limited diagnostic capabilities and treatment options may, in turn, have downstream effects on the prevalence and severity of physical and psychosocial sequalae. For example, it has been noted that sentinel lymph node biopsy for minimally invasive axillary staging is often unavailable in LMICs.[12] Consequently, patients are more likely to undergo axillary lymph node dissection resulting in higher rates of long-term complications (eg, lymphedema).[12] This situation is exacerbated by the general lack of and/or access to providers trained in identifying and treating long-term complications.

Four recommendations are offered for advancing cancer survivorship care more equitably across the globe. The first recommendation is to better understand the current state of survivorship care across low-, middle-, and high-income countries. This type of information is essential for understanding where efforts should be directed and provides a baseline for measuring future progress. Existing evidence consists largely of a survey focused on the state of care for survivors of childhood-onset cancers, administered to stakeholders from 18 countries across 5 continents.[13] These 18 countries vary considerably in terms of their levels of economic development as well as their health care insurance systems. Topics covered and reported for each country included the percentage of survivors with a SCP, the extent to which follow-up care is based on a risk-stratified approach, and the types and location of providers involved in follow-up care. Among the main conclusions was that, although resource-poor settings tended to have less resources for childhood cancer survivors, many heavily resourced settings reported challenges with care coordination and providing care based on risks associated with the cancer diagnosis and previous treatment exposures. Similarly, even in countries with universal health insurance, many childhood cancer survivors did not have a SCP or see a provider familiar with late effects. A similar global survey is currently underway to describe the current state of adult survivorship care following treatment for breast and colorectal cancer to fill the large gap in knowledge that currently exists for adult-onset cancers.

A second recommendation is to expand the number of national cancer control plans (NCCPs) that address cancer survivorship. NCCPs are viewed as the principal means for developing a strategic health approach to preventing and controlling cancer within the context of a country's sociocultural environment and health care system.[14] A recent review identified 158 countries that had publicly available cancer-related plans in the form of NCCPs or broader noncommunicable disease plans (NCDPs).[14] As part of the review, the content of each country's plan was examined to determine which of 15 aspects of cancer-related care (including survivorship care) were covered. Findings indicated that only 32% of cancer-related plans addressed survivorship care. The importance of NCCPs is underscored by the fact that survivorship care was addressed almost exclusively in countries that had a NCCP (97%) as opposed to countries that only had a NCDP (3%). Particularly striking were the differences between countries based on income levels. Whereas survivorship care was addressed in NCCPs or NCDPs for 60% of high-income countries, it was addressed in plans for only 17% of upper-middle income countries, 26% of lower-middle-income countries, and 13% of low-income countries. Although inclusion of survivorship care in a NCCP or NCDP does not necessarily translate into improvements in the care delivered, it represents a first step in recognizing that survivorship care is an important part of cancer care and one that should be monitored and improved as resources allow.

A third recommendation is to develop and disseminate resource-stratified guidelines for survivorship care. Existing guidelines for survivorship care, such as those developed by the National Comprehensive Cancer Network[15] and Cancer Care Ontario,[16] have been written largely in high-income countries and are applicable mostly in settings with a high level of available resources. Consequently, these guidelines are of limited relevance in many LMICs because of infrastructure and resource deficits. Additionally, these guidelines do not provide specific strategies to improve the quality of survivorship care as additional resources become available. Resource-stratified guidelines are designed to address this issue. They are intended to be evidence-based, economically feasible, and culturally appropriate guidelines that can be used in nations with substantial resource constraints to improve health outcomes.[17] The Breast Health Global Initiative (BHGI) represents one of the first systematic efforts in oncology to develop resource-stratified guidelines.[17] A key feature of the BHGI approach that has been widely adopted by others is to specify 4 levels (ie, basic, limited, enhanced, and maximal) that reflect incremental resource allocation and implementation. For example, the ability to meet the recommendations for the limited level assumes a setting has all the resources specified for the basic level. Consensus recommendations have been developed by the BHGI for a 4-level allocation of resources to address survivorship care following treatment of breast cancer.[12] These recommendations could form the basis of resource-stratified guidelines for survivorship care. Although several organizations (eg, American Society of Clinical Oncology, National Comprehensive Cancer Network) are developing resource-stratified guidelines for the treatment of common cancers, they have yet to address the need for similar types of guidelines for survivorship care.

A fourth and final recommendation is a call for the formation of regional partnerships to improve survivorship care. Building on research conducted largely in high-income countries demonstrating the benefits of early palliative care,[18] multiple efforts are currently underway to improve access to and delivery of palliative care in several LMICs through collaborations among professional organizations and societies and governmental and non-governmental organizations.[19] Work conducted in sub-Saharan Africa additionally suggests that adaptations of existing palliative care models and concerted action at the provider, community, and policy level are required to produce meaningful change.[20] Similar collaborations can and should be undertaken to improve survivorship care in regions of the world where there is currently limited access to this form of care for the growing number of people around the world who are surviving long after a cancer diagnosis.

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Conflicts of interest statement

The authors declare that they have no financial conflict of interest with regard to the content of this report.

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References

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Keywords:

Inequities; Survivorship

© 2019 by Lippincott Williams & Wilkins, Inc.