Strategies for Addressing Disparities in Cancer Survivorship
Presentation by Dr Monique Gary, Geisel School of Medicine at Dartmouth
At the May 2023 SEEK Workshop presented by Total Health, Dr Monique Gary, DO, FACS, FSSO from Geisel School of Medicine at Dartmouth highlighted the problem of healthcare disparities in cancer survivorship among underrepresented communities.
She began by defining a cancer survivor as per the National Coalition for Cancer Survivorship, which has stated that cancer survivorship begins at the time of diagnosis, and proceeds through a continuum through and beyond cancer treatment, recurrences, cure, and final stages of life, regardless of cause. She further noted that the extended definition also includes caregivers, family, and friends as a part of the survivor’s overall ecosystem. Dr Gary highlighted that the number of cancer survivors has increased dramatically over the past decade.
Patients may define cancer survivorship as a range of experiences. For some, this may mean living cancer free for the remainder of their life, for some they could be cancer free for a time, but die from a later recurrence, still others may develop serious long-term complications from their initial treatment. There are also those patients who will live with cancer chronically with no disease-free period. All of these experiences may be associated with significant psychosocial distress and confusion for the patient about what is happening to them, how to manage side effects, who they should see when experiencing new symptoms, as well as financial hardship associated with their treatment or ongoing surveillance. As such, when considering patient survivorship needs, Dr Gary noted there is a real need to consider a range of physical, psychological, spiritual, and social issues, all of which can impact quality of life (Box 1).
Box 1. Survivorship Needs Impacting Quality of Life [1]
Physical Components
e.g., Functional status, sleep, pain, fertility
Psychological Components
e.g., Anxiety, depression, fear of recurrence
Social Components
e.g., Family distress, finances/employment, affection/sexual health, isolation
Spiritual Components
e.g., Religion, hope, meaning of their illness, inner strength
1. Ferrell & Grant, 2004, in the American Cancer Society’s Cancer Treatment & Survivorship Facts & Figures, 2012.
In order to begin to address these survivorship needs, Dr Gary noted we first need to start at the patient level, and then ask what resources/policies/procedures can be provided at the level of the healthcare system, and at the highest level, what can be done as a society, and what can be done in terms of healthcare policy to help patients better access these survivorship services. She described some of the initiatives that have helped shape survivorship policies in the United States, beginning in 2006 with the Institute of Medicine Report which described the essential components of survivorship, and recommended a treatment summary and follow up care plan that should be given to every patient, and which should be clearly explained. She noted that in 2016, the American Cancer Society (ACS), in collaboration with the American Society of Clinical Oncology (ASCO) issued recommendations and guidelines for breast cancer survivorship care that have now served as a model for other cancers. These guidelines encompass five key areas in breast cancer care, including surveillance for breast cancer recurrence, screening for second primary cancers, assessment and management of physical and psychosocial long-term and late effects of breast cancer and treatment, and health promotion. In addition, a survivorship care plan was developed which cancer programs are now required to use; the plan summarizes multiple elements including who the patient’s providers are, what treatment they had, clinical stage, surgical course, medications, radiation, anticipated side effects and what an ongoing management plan might look like. The plan is then reviewed with the patient, and it becomes essentially a “living document” as the patient moves along through various phases of their cancer journey. The elements in the breast cancer guidelines are, as noted above, applicable to many other cancers, and the basic elements of a survivorship care plan are outlined in Box 2.
Box 2. Basic Elements of a Survivorship Care Plan
· Prevention of cancer and late effects
· Surveillance for recurrence and screening for new cancers
· Identification of interventions for consequences of cancer and its treatment
· Coordination between oncology specialists and primary care providers
One of the most important components in a survivorship plan is coordination between oncology specialists and the primary care provider. Dr Gary gave the example of glycemic control, which can be significantly compromised by cancer treatment, but changes again after treatment is completed. As such, it is essential to communicate these anticipated changes in glycemic control to their primary care physician to manage conditions such as A1c management, reduced mobility and/or obesity which can be present.
Dr Gary then highlighted some of the key findings and results from the American Association for Cancer Research (AACR) 2022 Cancer Disparities Progress Report, which includes a discussion of cancer survivorship. Disparities were seen in the burden of preventable cancers, including lung cancer. There was also a decline in breast cancer-related mortality, however, the rate of decline in racial minorities was not as pronounced as it was in White populations. In addition, the rate of clinical trial participation was only 25% for non-White (Black, Asian, Hispanic) participants as compared to 75% for White participants. In the LBGTQ+ community there was also evidence of a complicated conundrum of issues across the cancer care continuum, including risk, screening, treatment, and survivorship. On the survivorship issue in particular, 45% of participants had not engaged in a review of their post-treatment care plan (survivorship plan) with their provider, and even among the 55% whose providers had talked to them about this plan, 87% reported the plan was not well suited for the unique needs/considerations of LGBTQ+ individuals. Dr Gary emphasized this was an especially important area for improvement and further research.
Dr Gary further emphasized that medically underserved populations bear a disproportionate burden of adverse impact in cancer survivorship; this includes factors such as navigation, financial impact, nutritional and psychosocial support. She noted that by better understanding these challenges in underserved populations, recommendations and guidelines can be created that are more appropriate and reflective of these challenges. One example of this is that Black and Hispanic populations have increased financial coping behaviors such as skipping medications because of cost, which shows how these survivorship factors can impact longer term outcomes (i.e., poorer adherence and compliance with cancer medications results in poorer outcomes).
In her discussion of this most recent progress report, Dr Gary emphasized the limited data in this area, specifically as it relates to understanding the challenges and barriers to access and utilization of survivorship resources. In addition, she stressed that by relying on previous/existing guidelines for surveillance and symptom management, an opportunity is missed to address problems in individuals not included in those guidelines, and this can result in even further disparities in care and outcomes. Overall, Dr Gary suggested that many current recommendations are based on limited data and as such are not as strong as they could be for minority and underserved populations. She briefly highlighted some useful E-learning educational resources for primary care providers and a guide for delivering quality survivorship care that can be obtained at the website: http://cancersurvivorshipcentereducation.org/
In the final portion of her talk, Dr Gary highlighted the ACS Roundtables program in a number of cancer subtypes such as colorectal, lung, breast, and cervical cancers. These roundtables are designed and charged with integrating guidelines, delivery of services, and addressing barriers through screening, treatment, and into survivorship. For example, the breast cancer roundtable, established in 2022, is charged with developing high-quality, compassionate, and culturally appropriate resources for survivorship, to look at quality of life, to highlight barriers, and strategies for overcoming barriers, in an effort to ensure that all cancer centers have the resources and a strategy for implementation, not only through screening, diagnosis, and treatment, but also with a focus on survivorship.
Summary
Dr Gary summarized by highlighting the need for more data and research on navigation and utilization of survivorship services, and a need for more innovative programs to assess existing barriers and overall patient access to survivorship resources. In addition, she emphasized a need to evaluate the limitations of the existing guidelines on factors such as cancer surveillance and symptom management in underserved populations; for example, in breast cancer, she noted the current guidance and recommendations in surveillance are not well suited for young women of color. In this regard, if there is insufficient or limited evidence to make such recommendations, Dr Gary stressed the need for greater community collaboration and development of innovative approaches that should be published and made available to all cancer centers to encourage best available practice.
You can see Dr Gary’s full presentation from the SEEK Workshop here: