Background
Cancer-related psychological distress and anxiety is widely reported side effect of cancer during and after treatment. Nearly one-third of cancer survivors, around 16.9 million in the United States, are diagnosed with mental health conditions. Failure to recognize and address psychosocial concerns, such as distress and anxiety, have been associated with decreased immune function among cancer survivors, resulting in more frequent infections and lower adherence to cancer treatment. Recent studies have also demonstrated that psychological stress can affect tumor emergence, progression, and metastasis.
Addressing psychosocial distress and anxiety can result in improved health outcomes and quality of life. As the number of cancer survivors increase with long-term challenges impacting psychosocial well-being, there has been a growing awareness and prioritization of distress and anxiety management as part of standard care. National oncology organizations, such as the National Comprehensive Cancer Network (NCCN) and the American College of Surgeons (ACoS) Commission on Cancer (CoC), have established recommendations to integrate psychosocial care into standard practice.
Definition of Distress and Anxiety
Cancer-related distress and anxiety extends along a range of emotions and is a subjective experience that may fluctuate throughout an individual’s disease course. Distress can range from normal feelings of nervousness to disabling emotions that can impact adherence to treatment, decrease satisfaction with medical care, increase health-care costs, lead to poor self-management of symptoms, and decreased quality of life. The NCCN defines distress as “a multifactorial unpleasant experience of a psychological (i.e., cognitive, behavioral, emotional), social, spiritual, and/or physical nature that may interfere with the ability to cope effectively with cancer, its physical symptoms, and its treatment.” Symptoms of anxiety are also normal feelings and can be a temporary and adaptive reaction to cancer and its treatment. However, when symptoms of anxiety, such as excessive worrying and fear, are prolonged, intense, and interfering with daily functioning, it might be classified as a psychological disorder.
Distinguishing normal symptoms of emotional distress and psychiatric disorders might present as a challenge to the primary cancer team due to multiple reasons, such as minimization of symptoms by patients or red flags being ignored by the medical team. Therefore it is important to identify and address symptoms of emotional distress and anxiety as early as possible with potential referral to mental health specialists available in one’s facility or community. Addressing psychosocial distress is recommended during routine care with some concerns being managed or resolved by the primary team during visits or follow-ups, such as questions regarding treatments and long-term prognosis. To illustrate its critical importance within routine care, distress screening has been increasingly considered the “sixth vital sign,” along with pain, temperature, pulse, respiration, and blood pressure.
Distress and Anxiety in the Breast and Gynecological Cancer Populations
The growing population of survivors of breast and gynecological cancers and the increased prevalence of distress and anxiety necessitate the pressing need for health-care professionals to address psychosocial issues throughout the continuum of cancer care. Advancements in cancer research and treatment are saving and prolonging the lives of many individuals diagnosed with breast and gynecological cancers. Survivors are now more likely to undergo treatments that may trigger distress and anxiety at various time points, including diagnostic workup, early-stage cancer, active treatment, advanced stage and metastatic disease, and end-of-life. Given the volume of triggers across both populations and the likelihood of encountering and managing these triggers during the rehabilitation process, it is imperative that health-care professionals are aware of the signs and symptoms of mental health concerns and provide support as appropriate. For many patients, effectively addressing these symptoms can alleviate some, if not all, of the psychosocial burden.
The Importance of Psychosocial Screening and Intervention
In the last decade, there has been a growing awareness of the importance of psychosocial screening and intervention as part of comprehensive cancer care. The negative effects of distress and anxiety on health outcomes have been increasingly reported in the literature, and current research shows that survivors of cancer treatment are at elevated risk for mental health issues, fear of recurrence, and depression, which may persist many years after diagnosis. To highlight the importance of integrated distress screening in standard cancer care, the ACoS CoC has mandated psychosocial distress screening and referral as a condition for cancer center accreditation beginning in 2015. In order to standardize care across cancer centers, several regulatory bodies have published guidelines for screening, assessment, and management of psychosocial concerns with the provision of clinical pathways to guide clinical practice in efforts to standardize care across oncology centers and equip health-care professionals with the tools necessary to implement these recommendations into everyday practice. The NCCN recommends routine screening and monitoring of emotional distress, as cancer diagnosis and treatment burden can impact an individual’s functional performance and quality of life throughout treatment and into survivorship and end-of-life.
Psychosocial Needs in the Breast and Gynecological Cancer Populations
While certain triggers for distress and anxiety may be more common or generalizable to the oncology population, such as receiving a cancer diagnosis or treatment-related fatigue, there are certain triggers specific to the breast and gynecological cancer populations, which must be considered in order to provide the most holistic and individualized care possible.
Distress and Anxiety in Early-Stage Disease
Due to increased awareness of disease and early screening methods, patients are being diagnosed with breast and gynecological cancer at earlier stages than in the past. In these scenarios, patients may be scheduled for treatment not long after diagnosis. Patients are at increased risk for distress during this initial stage, as they may be caught in the throes of processing the diagnosis itself while being required to make crucial decisions about their health care, preparing for treatment, and managing subsequent recovery. Improved survival rates of early-stage breast cancer and the opportunity for immediate breast reconstruction have been beneficial for health outcomes, but this group is at risk for being overlooked during psychosocial screening due to the curable nature of early-stage disease. It is crucial to recognize that distress is not dependent on prognosis and should be addressed despite the stage of disease or type of treatment.
Impact on Progress and Treatment Adherence
Studies have shown that underlying distress or anxiety can inhibit progress and even impact treatment adherence. For example, multiple studies have found associations between higher levels of distress and increased risk of intentional nonadherence to tamoxifen after breast cancer surgery, despite the known benefits of hormone treatments in preventing disease recurrence. Furthermore, women with elevated levels of distress and anxiety were found to have increased persistent postmastectomy pain. Health-care professionals should make efforts to identify predictors of intentional or unintentional nonadherence and sources of distress to ensure patient understanding of the necessity of such treatments. Research has shown inconclusive evidence for the relationship between side effects and nonadherence; rather, evidence suggests that belief systems around illness and treatment necessity have far more weight in decision-making around adherence. This highlights the importance of investigation into psychological or psychosocial factors, which may contribute to nonadherence from early stages to later in the treatment pathway.
Fear of Recurrence
Fear of recurrence is a prevalent psychological burden that may manifest from a normal response to cancer to a pathological response. The potential ramifications of improved treatment methods and increased survival rates may lead to an increase in psychological burden over a prolonged period of time due to fear of disease recurrence despite having reached remission. Gynecological cancers have one of the highest cancer recurrence rates, with recurrence estimated in 70% of patients with ovarian cancer. Type of breast cancer treatments can influence fear of cancer recurrence; breast conservation can lead to increased anxiety while double mastectomies can actually lead to nonadherence with adjuvant hormonal therapies. Higher levels of fear of recurrence have been correlated with lower quality of life, anxiety, and functional impairment. Long-term treatment and psychosocial care are warranted in order to ensure positive adjustment and improved quality of life after treatment.
Sexual Dysfunction and Altered Body Image
The sensitive nature of sexuality and cultural notions of sex as “taboo” may contribute to increased distress, as patients may feel that their needs are not being addressed appropriately. Patients themselves may also feel uncomfortable bringing up sexual concerns with their health-care provider. The neurotoxic side effects of chemotherapy may lead to estrogen deprivation, menopause, vaginal dryness, and fertility loss. Side effects of radiation include lymphedema, inflammation of tissues, and loss of organ function. Side effects of hormonal treatments include estrogen deprivation or decline with resulting side effects such as menopause, hair thinning, weight loss or gain, and hot flashes. Surgery can result in disfigurement, scarring, and resection of sexual organs.
Sexual dysfunction can be a source of significant distress depending on the type and location of treatment intervention. Women with breast cancer may experience alterations in body image perception and difficulty with body acceptance with partial or entire breast removal, breast reconstruction, appearance of scars, and/or postoperative side effects such as pain or lymphedema. Women with gynecological cancer warrant specialized attention in the area of sexual dysfunction, as surgery and radiation to the pelvic organs have direct impact on sexual functioning. Women have reported that after surgery, radiation, or a combination of both treatments, sexuality-related and bowel symptoms were most distressful, some of which include reduced orgasm frequency, overall intercourse dysfunction, reduced orgasms, vaginal changes, dyspareunia, and bowel dysfunction.
Adolescent and Young Adult Survivors of Breast and Gynecological Cancers
Throughout the course of diagnosis and treatment, it is pertinent to be mindful of the age range of the breast and gynecological cancer patient in order to address distress levels and structure goals of treatment appropriately. The young adult population, defined as ages 18–39, with breast and gynecological cancers report significant levels of distress, as they may be less likely to anticipate the onset of cancer and have to confront the potential impact of the disease on developmental milestones. Diagnosis and treatment may lead to decreased independence, treatment-induced infertility, loss of school or work, and increased social isolation. Younger age at diagnosis in of itself was found to be a predictor of psychological distress in gynecological cancer survivors. Furthermore, when compared to their disease-free counterparts, young women diagnosed with breast or gynecological cancer were found to be four times more likely to have serious psychological distress. A majority of young women with breast cancer reported distress at the end of treatment with concerns, including fertility-related distress, body image changes, and fear of recurrence. A study comparing adolescent and young adult (AYA) breast cancer patients to adult breast cancer patients in their forties found that more aggressive therapy, specifically mastectomy, lymph node removal, and chemotherapy, was recommended or chosen for women in the AYA age-group. More aggressive disease and treatment may result in greater functional limitations and distress later on in life.
Metastatic Breast Cancer
With advancements in metastatic breast cancer treatment, patients are now living longer than ever before. The unique aspect of this is the need for indefinite treatment due to the incurable nature of the disease. High levels of distress and increased symptom burden have been noted in this population due to the psychological impact of needing continuous treatment in order to survive. In addition, many providers do not refer these patients to rehabilitation services due to prognosis and fear of increasing fracture risk in those with bone metastases. However, this patient population would benefit greatly from continued rehabilitation efforts despite overall prognosis. For example, a physical therapy referral would inform appropriate physical activity within safety precautions, an occupational therapy referral would facilitate optimal engagement in meaningful occupations, and a psychosocial referral to a mental health specialist would address distress and anxiety. Health-care providers should advocate for early and continuous involvement of rehabilitation for those diagnosed with metastatic breast cancer in order to mitigate distress caused by symptom burden.
Men With Breast Cancer
Breast cancer in men is rare, consisting of only less than 1% of all breast cancers. However, this population requires special consideration because a decreased awareness of the disease in men may also result in diagnostic delays and poorer prognosis. It is common for programs to tailor resources and materials to women, thus creating a less inclusive environment for men who are diagnosed. Men have oftentimes expressed hesitation while discussing their diagnosis with others, which can ultimately foster social isolation, as they may feel stigmatized by a diagnosis so strongly associated with women. Men with breast cancer also reported worse health-related quality of life, particularly in role functioning, compared with their disease-free counterparts. These effects may be minimized by proactively screening for distress and effectively providing support in this patient population.
Caregiver Needs
Caregivers play a pivotal role in the promotion of recovery and provision of support for these patients. In addition to providing instrumental care and support, caregivers are often tasked with clinical responsibilities as well, including postsurgical drain management, administration of medication, and assistance with activities of daily living. For male caregivers of postsurgical patients with gynecological cancer during hospitalization, the perceived preparedness of the caregiver was not related to emotional distress, indicating that even those who appear well prepared may have significant needs related to health and psychological problems. Another study found that in 50 caregivers of patients with end-stage ovarian cancer, caregivers reported that they enjoyed and felt privileged to care for their loved one, but that this was independent from the burden of disrupted schedules and financial hardship. It is important to consider that caregiver burden can be expected to increase due to increased disability and declining functional abilities in individuals with progressive or end-stage disease.
Screening for Distress and Anxiety
Screening as Preventative Medicine
“Preventive medicine is a medical specialty recognized by the American Board of Medical Specialties (ABMS), which focuses on the health of individuals and communities. The goal of preventive medicine is to promote health and well-being and prevent disease, disability and death.” Screening should be viewed as a powerful preventive medicine tool utilized in health care. It is also vital to be aware of further benefits of reducing distress, such as decreased visits to emergency or urgent care rooms, decreased hospital readmissions, decreased consumption of resources, and decreased length of stays during an inpatient admission. The NCCN, the Institute of Medicine, and the American Society of Clinical Oncology (ASCO) have identified the screening, assessment, and follow-up as well as treatment of psychosocial distress as a quality care standard in routine cancer care. The US Preventive Services Task Force recommends screening patients in clinical practices that have systems in place to ensure precise diagnosis, efficient treatment, and follow-up care.
Screening for distress near the time of diagnosis and rescreening throughout the treatment continuum serves as a preventative medicine tool to minimize the consequences of substantial psychosocial concerns. By preventing, addressing, and reducing distress and anxiety, health-care professionals can improve the quality of life of patients and “reduce the human cost of cancer” by addressing not only medical but also psychosocial, psychiatric, financial, emotional, and spiritual concerns.
Oncology Stakeholders and Standards for Distress Screening
American College of Surgeons Commission on Cancer
The ACoS CoC is a consortium of professional organizations that publishes requirements for accreditation of cancer clinics and establishes standards to support high-quality, comprehensive cancer care. The CoC recently published Optimal Resources for Cancer Care: 2020 Standards that are effective as of January 2020 and provide accreditation requirements for psychosocial distress screening. The CoC requires that psychosocial services are available on-site or by referral, and that the findings of psychosocial distress screenings must be reported to the institution’s cancer committee.
It is recommended that all cancer programs implement a policy and procedure for distress screening in order to identify the psychological, social, financial, and behavioral issues, which may affect the patient’s treatment plan and treatment outcomes. The CoC provides a list of requirements necessary to support the implementation of comprehensive psychosocial distress screening in cancer programs and measure compliance with accreditation standards. The feasibility of implementing these standards requires cancer programs to carefully consider their program’s size, resources, location, and patient population.
At least one distress screening during the first course of treatment is required, with additional screenings to be administered as necessary or at the discretion of the health-care provider. The mode of administration is to be determined by the site, and medical staff who administer or interpret that the screening must be properly trained. Standardized and validated instruments or tools are recommended. Upon identification of moderate or severe distress, it is crucial to follow up via direct contact in order to confirm the screening results and identify the appropriate referrals.
The National Comprehensive Cancer Network
The NCCN’s Guidelines for Distress Management provides an overview of the evidence in support of early and regular distress screening and a consensus of evidence-based screening and treatment methods. The NCCN’s Distress Management Panel has established Standards of Care for Distress Management with principles for implementation of these standards in-line with the recommendations of the ACoS CoC ( Fig. 6.1 ).
American Society of Clinical Oncology’s Quality Oncology Practice Initiative
In 2002 the ASCO introduced the Quality Oncology Practice Initiative (QOPI) measure as a pilot project aimed at evaluating current practices and fostering performance improvement in the management of physical and psychological issues within outpatient oncology settings. The QOPI Program understands the essential nature of psychosocial screening and how cancer diagnosis and treatment can cause detrimental effects on well-being, functional outcomes, and quality of life. The QOPI Certification Program Standards requires documentation of initial psychosocial assessment in the medical record and subsequent action as indicated. Psychosocial documentation may include a distress or anxiety screening, patient self-report of distress or anxiety, or medical record documentation regarding patient’s coping, adjustment, depression, distress, anxiety, emotional status, family support and caregiving, coping style, cultural background, and socioeconomic status. In recognition of the fact that psychosocial considerations may change over time, it is recommended to conduct reassessments at regular intervals as well as establish policy or written procedure to describe the workflow and parameters for referral processes. For example, reassessments may be conducted with each new cycle of chemotherapy, the start of a clinical trial, or a transition to the next level of care. These are all vital time points during which distress and anxiety screening and assessment are warranted.
Implementation of Psychosocial Screening of Distress and Anxiety
Distress screening by health-care professionals can be performed periodically through various communication pathways such as face-to-face clinic appointments, phone calls, and electronic methods. Leveraging the functionality of institution electronic medical records (EMRs) could increase efficiency and the volume of patients screened. A key aspect of implementing a screening process is to include stakeholders throughout the institution, for example, physicians, nurses, patient navigators, and rehabilitation clinicians and schedulers.
The Association of Community Cancer Centers recommends the following to implement distress screening :
- 1.
Establish a point person for the screening program.
- 2.
Create a psychosocial care network.
- 3.
Design a standardized protocol.
- 4.
Tailor the screening program to the patient population.
With an increase in distress screening comes the responsibility to create effective evaluation and treatment pathways to address the resulting increase in volume of needs and referrals. Identifying which team member is responsible for specific concerns on the screening tool is the key to directing patients to the appropriate provider. It is important that every team member involved in the screening and treatment process communicates their involvement within the medical record in order for the team to see that the patient was screened, assessed, and provided resources for their particular concerns. Once a process is set in place within an institution, it is recommended to then reassess the process to evaluate the effectiveness of the screening program.
Screening Tools
Prior to utilizing a screening tool, it is crucial to obtain a thorough understanding of the patient’s biopsychosocial profile that may include the patient’s medical history, social issues, psychiatric history, drug/alcohol history, faith system/spirituality, cognitive concerns, and physical issues. Ideally, multiple disciplines may contribute to the documentation of the patient’s profile in order to ensure that complete and accurate information is obtained. Upon a review of the patient’s history, validated screening tools ( Table 6.1 ) may be utilized to further pinpoint areas of distress or anxiety and identify potential referral sources.
