Creating a Breast Cancer Survivorship Plan and Clinic

Background

As of January 2019, there were 16.9 million cancer survivors in the United States, of which women with a history of breast cancer made up 3.8 million (22.5%). Breast cancer remains the most common cancer affecting women, with greater than 260,000 cases diagnosed annually.

Cancer survivor and cancer survivorship were initially defined by the National Coalition for Cancer Survivors (NCCS) in 1986. The original definition of a cancer survivor referred to the person as well as their family and caregivers from the time of diagnosis through the course of the person’s life. According to the National Cancer Institute (NCI), cancer survivor refers to an individual from the time of diagnosis through the balance of his or her life.

In 1985, Dr. Fitzhugh Mullan, describing his own experience with anaplastic primary seminoma, was the first to describe survivorship in phases: acute survivorship, extended survivorship, and permanent (long-term) survivorship. Survivorship is a variable and diverse experience for which several definitions have been proposed. The NCI Office of Cancer Survivorship (OCS) defines its current mission as “enhanc[ing] the quality and length of survival of all persons diagnosed with cancer and to prevent, minimize, or manage adverse effects of cancer and its treatment.”

There are four central tenets of survivorship care: (1) prevention of new or recurrent cancers, (2) surveillance of new or recurrent cancers, (3) interventions for late and long-term effects, and (4) coordination of care. Included within prevention of new or recurrent cancers is health promotion. Health promotion focuses on healthy lifestyle behaviors that have been shown to reduce risk of recurrence and mortality, reduce risk of secondary cancers, and improve quality of life. Surveillance refers to surveillance for breast cancer recurrence as well as screening for secondary malignancies. Assessment and management of late and long-term effects encompasses screening, education, and treatment for the myriad of symptoms that may result from either breast cancer or treatments received for breast cancer. Lastly, care coordination focuses on improving communication and transition of care, particularly after completion of active treatment.

This chapter will focus on the current survivorship landscape, including: cancer survivorship standards, survivorship clinic models, survivorship clinic development, survivorship care delivery, gaps and unmet needs, and future research opportunities.

Survivorship Guidelines and Mandates

The Institute of Medicine’s report “ From Cancer Patient to Cancer Survivors: Lost in Transition ” was the first to propose a survivorship care plan (SCP) where the comprehensive care summary and follow-up plan is clearly and effectively explained. This document was initially envisioned as a summary of recommended screening and follow-up care as well as a means to enhance coordination and communication between providers.

Since this seminal publication, multiple expert panels and clinical societies, including the American Society of Clinical Oncology (ASCO), National Comprehensive Cancer Network (NCCN), and Commission on Cancer (CoC), have proposed guidelines with regard to recommended components and templates for SCP ( Table 71.1 ).

Table 71.1

Survivorship Care Plans—Recommended Components

Institute of Medicine ^a	American Society of Clinical Oncology (ASCO) ^b		National Comprehensive Cancer Network (NCCN) ^c
1. Diagnosis and stage	1. Treatment summary	A. Contact information for providers and treatment center	1. Treatment received
2. Initial treatment plan and dates of treatment		B. Diagnosis and staging	2. Follow-up, surveillance and screening recommendations
3. Toxicities during treatment		C. Treatments received (surgery, radiation, chemotherapy, biologics, endocrine therapy)	3. Acute, late, and long-term side effects and health risks
4. Expected short- and long-term toxicities		D. Ongoing toxicities	4. Role of oncologist, primary care, and other physicians in ongoing care
5. Monitoring needed for late toxicities	2. Follow-up care plan	A. Surveillance plan	5. Healthy behavior recommendations
6. Provider responsible for survivorship care		B. Ongoing treatments	6. Periodic assessment of needs and resources
7. Recommended preventive behaviors and interventions		C. Age- and sex-appropriate care
		D. Health promotion

a Ganz PA, Hewitt M. Implementing cancer survivorship care planning: workshop summary, National Academies Press; 2007.

b Mayer DK, Nekhlyudov L, Snyder CF, et al. American Society of Clinical Oncology clinical expert statement on cancer survivorship care planning. Journal of Oncology Practice. 2014;10:345–351.

c NCCN Clinical Practice Guidelines in Oncology. Survivorship (ed 2021), National Comprehensive Cancer Network, 2021.

American Society of Clinical Oncology (ASCO)

The ASCO is a professional organization that represents all specialists who care for patients with cancer. ASCO is actively involved in the development of survivorship guidelines and resources for both patients and providers. This includes disease-specific SCP templates as well as review of the literature and guideline development every 3 years.

National Comprehensive Cancer Network (NCCN)

The NCCN is an alliance of cancer centers in the United States. Annually, NCCN updates clinical practice guidelines in oncology, including guidelines on survivorship care. Survivorship guidelines include sections on general survivorship principles, preventive health, and late and long-term effects on psychosocial and physical health.

European Society for Medical Oncology (ESMO)

The European Society for Medical Oncology (ESMO) is the European professional society for medical oncology. It published a patient guide on survivorship in 2017. Additionally, through its clinical practice guidelines committee on supportive and palliative care, it has published guidelines in areas of high importance in oncology. This includes guidelines on cancer-related pain, bone health in cancer patients, cancer, pregnancy and fertility, and management of cardiac disease.

Commission on Cancer (CoC)

The CoC was established in 1922 by the American College of Surgeons and is a consortium of professional organizations that publishes standards to enhance and standardize quality of cancer care. Survivorship care was first included as recommended care in the CoC standards in 2011, and Standard 3.3 mandated the implementation of a SCP by 2015. In 2020, the CoC published Standard 4.8, which stipulates the development and implementation of a survivorship program by accredited institutions. The program is tasked with establishing a list of services (minimum of three) provided either onsite or per referral for survivors. CoC continues to encourage that cancer survivors receive a SCP; however, the receipt of a SCP is no longer mandated and is included in a list of multiple program services that can be utilized by the Survivorship Program to fulfill the CoC Standard ( Table 71.2 ).

Table 71.2

Recommended Cancer Survivorship Program Services

From Commission on Cancer. Optimal Resources for Cancer Care: 2020 Standards. 2020. < https://www.facs.org/-/media/files/quality-programs/cancer/coc/optimal_resources_for_cancer_care_2020_standards.ashx >.

Options for Three Provided Services
Treatment summaries (TSs)
Survivorship care plans (SCPs)
Screening programs for cancer recurrence
Screening for secondary cancers
Seminars for cancer survivors
Rehabilitation services
Nutritional services
Psychological support services
Psychiatric services
Support groups and services
Formalized referrals to specialists (cardiology, pulmonary, reproductive endocrinology)
Financial support services
Physical activity services

Survivorship Care Plan Delivery

Changes in CoC standards help to illustrate a change in focus in survivorship care delivery. The SCP should be thought of as an aid in the discussion and development of an individualized care plan. Survivorship assessment should include screening for physical effects as well as adverse psychological effects of cancer and treatment. Social and spiritual well-being should also be considered. This includes referrals to social work, financial resources, support groups, and other services as indicated.

Although the field of oncology universally acknowledges the importance of guideline-based, comprehensive care for survivors of breast cancer, there remain barriers to implementation of this care, and ongoing unmet needs have been highlighted in many studies.

Unmet Needs, Gaps, and Barriers in Survivorship Care

Unmet Needs

Adverse effects can result from both cancer and cancer-directed therapies and can range from psychological to physical to financial in nature. In qualitative studies, symptoms described have ranged from stress to loss of sexual desire to dry mouth. Furthermore, survey studies have shown that up to 89% of participants describe at least one symptom and a mean of five symptoms after completion of curative intent treatment.

Unsurprisingly, other studies have demonstrated that greater than 65% of survey participants report at least one unmet need. Commonly reported unmet needs include: fear of cancer recurrence, stress, fatigue, sleep disturbance, depression or anxiety, cognitive difficulties, and menopausal symptoms. Although needs can vary and sometimes improve over time, surveys of long-term survivors (greater than 5 years from diagnosis) demonstrate that up to 30% of respondents have at least one psychological, physical, social, or spiritual need. Commonly reported unmet needs include need for enhanced education and information related to side effects and long-term effects of treatment, management strategies for fear of recurrence, and stress reduction strategies. Up to 30% of cancer survivors rate their health as fair or poor. Seventeen percent of respondents to the National Health Interview Survey were unable to work due to health problems, and 58% of respondents had at least one functional limitation. This is important, as there is an established correlation between survivors with unmet needs and decreased adherence to treatment and surveillance, as well as worse perceived mental and physical health.

Furthermore, disparities have been well documented, with those from underserved and minority populations having inequitable access to quality survivorship care. For example, the Cancer Care Outcomes Research and Surveillance (CanCORS) Consortium demonstrated increased rates of financial hardship amongst Hispanic and Black participants. Additionally, access and quality of survivorship has been shown to vary based on socioeconomic status, age, gender, race, and ethnicity, as well as the education level and religious affiliation of the individual. Health care barriers that survivors face when trying to obtain survivorship care include financial toxicity, physical distance, and time constraints, as well as difficulty accessing complex health care systems.

Evidence Gaps

In order to better address the needs of cancer survivors, the NCI, the National Academies, and other stakeholders have focused on identifying gaps in knowledge and research. The National Academies 2017 Long-Term Survivorship Care After Cancer Treatment: Proceedings of a Workshop identified the following research gaps in survivorship care:

1.
Research involving patients older than 65 years old
2.
Research involving long-term survivors (greater than 5 years from diagnosis)
3.
Research evaluating patterns and quality of care
4.
Intervention studies

The 2019 NCI Survivorship Workshop also identified research priorities, which are illustrated in Table 71.3 .

Table 71.3

Identified Evidence Gaps From 2019 NCI Survivorship Workshop

From Gallicchio L, Tonorezos E, de Moor JS, et al. Evidence gaps in cancer survivorship care: a report from the 2019 National Cancer Institute Cancer Survivorship Workshop. J Natl Cancer Inst. 2021;113(9):1136–1142.

Domains
Psychosocial	Health Promotion	Care Coordination	Finances
1) Trajectory	1) Drivers and mechanisms of behavior change	1) Management of comorbidities	1) Modifiable factors
2) Prevalence and patterns of disease course	2) Biomarkers	A) Risk stratification	2) Association with payer systems
3) Real-world data and interventions	3) Sun risk reduction	B) Self-management	3) Vulnerable groups
4) Inclusion of understudied subgroups	4) Alcohol risk reduction	C) Rehabilitation	4) Understudied groups

Overall, there was a consensus that improving understanding of recurrence risk as well as mechanisms of late effects would aid in rectifying known needs of survivors. Furthermore, more parity in research is needed, particularly with regard to enrollment of underrepresented subgroups. Cancer survivors constitute a heterogeneous and diverse group of individuals; thus improving data capture such as comorbidities, patient-reported outcomes, symptoms, and functional status will enhance general knowledge as well as inform future interventions and studies.

Special Populations

Sexual and Gender Minorities (SGMs)

Sexual and gender minorities (SGMs) include individuals who identify as lesbian, gay, bisexual, transgender/transsexual, queer/questioning, and intersex (LGBTQI). There has been increasing recognition within the field of medicine that the SGM community represents a growing and underserved population. It is estimated that between 3% and 12% of adults in the United States identify as a sexual minority. Despite growing recognition, the magnitude of need remains unknown, as cancer surveillance efforts and many national data registries do not inquire or obtain information about sexual orientation.

Although difficult to confirm, there is concern for higher rates of breast cancer particularly in women who identify as either lesbian or bisexual due to higher reported rates of smoking, obesity, alcohol use, and nulliparity. Additionally, evidence highlights higher levels of psychological distress in the SGM community as well as increased distrust and anxiety related to accessing care. Patients report difficulty accessing culturally competent care. Additionally, providers rarely receive training in culturally competent care.

ASCO recognized in 2015 the urgent need for research, workforce diversity, and training as well as quality improvement to understand and reduce disparities in cancer care access and delivery to the SGM community.

Adolescent and Young Adults (AYA)

Between 2000 and 2014, patients younger than 40 years accounted for 5.6% of all invasive breast cancer diagnoses. Overall, there has been a slight increase in breast cancer diagnoses among the AYA population since 1992, with the greatest increase in women older than 35 years. Additionally, breast cancer remains the most common secondary cancer for women with a history of childhood cancer. There are several important needs to consider when providing survivorship care to AYA survivors.

Fertility preservation and pregnancy remain important considerations for the AYA survivor community. It is recommended for patients to receive fertility counseling at time of diagnosis; however, studies have shown that less than 50% of AYA patients are referred to reproductive endocrinology and other fertility specialists. Additionally, cost and lack of insurance coverage remain barriers with regards to accessing fertility preservation services. Enhancing access and augmenting patient education is important, as 40% to 50% of AYA survivors have expressed fertility concerns in studies, and cancer-related infertility has been linked to higher levels of distress and lower quality of life.

Psychosocial concerns are common in the AYA population. Posttraumatic stress has been reported in greater than 40% of AYA survivors. Additionally, over 30% of AYA survivors report moderate to severe anxiety or depression, and greater than 60% report fear of recurrence. Given high levels of distress in this population, it is important for patients to be screened and referred to appropriate mental health services at regular intervals throughout and beyond active treatment.

Another commonly reported unmet need for AYA survivors is sexual health, particularly concerns related to sexual dysfunction, body image, and romantic relationships. Research has shown that patients who engage in conversations regarding sexual health with their providers have increased utilization of contraception, improved knowledge of risks and options, and enhanced relationships with their providers.

Lastly, all AYA survivors should be screened for financial toxicity. Financial counseling was the most common unmet need described by participants in the AYA Hope Study. Compared to their peers without a diagnosis or history of cancer, AYA survivors are less likely to work. They also have a lower median household income, lower productivity, higher annual medical costs, and higher levels of debt.

Underrepresented Minorities (URMs)

Overall, breast cancer survival rates have improved over the last 25 years; however, disparities in 5-year survival rates remain, with lower survival rates for Black women (80%) and Hispanic women (88%) compared to non-Hispanic White women (90%). In 2015, the American Association for Cancer Research (AACR), the American Cancer Society (ACS), the ASCO, and NCI published a policy statement reflecting priorities to improve the following areas :

Enhance collaborative transdisciplinary research focused on URM communities
Augment participation and representation of URM communities in cancer research
Enhance oncology practice metrics
Evaluate and promote oncology care delivery in low-resource environments
Support and augment community engagement research (CER)
Promote and support diversification of oncology workforce

In addition to the research and care delivery priorities listed earlier, lifestyle interventions and energy balance research remain understudied and have the potential to enhance breast cancer outcomes for URM communities. Furthermore, enhancing survivorship education and dissemination of SCPs has the potential to reduce patients’ uncertainty regarding follow-up care and breast cancer risk reduction. A meta-analysis by Lewis-Thames and colleagues highlighted the acceptability of SCP amongst URM survivors as well as lower rates of access and receipt compared to non-Hispanic White women.

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