Learning Objectives:After participating in this continuing professional development activity, the provider should be better able to:

1. Describe biopsychosocial distress and its impact on patients with gynecologic cancer.

2. Plan support strategies for patients and families to decrease distress.

3. Identify the basic components of a trauma-informed approach and select it, when appropriate.

A cancer diagnosis is a significant life event that can prompt new challenges or exacerbate existing, complex life situations. Many patients face a variety of biopsychosocial stressors including practical, emotional, and spiritual concerns. These issues can range from access to treatment and caregiving support to associated financial toxicity from medical bills and loss of income due to employment changes. However, coping with a rare cancer diagnosis and clinical trials and treatments with unknown clinical outcomes can heighten a patient's anxiety and uncertainty. Although personal strengths including a positive outlook, strong support networks, and self-advocacy can aid in a patient's experience with their disease, many patients experience mental and emotional suffering that requires attention in a holistic cancer care model.1

By thoroughly evaluating a patient's concerns and needs throughout the trajectory of their cancer care and into survivorship, providers can enhance a patients' self-efficacy, compliance with treatment plans, and connect patients and families to appropriate resources to impact a range of outcomes. This article identifies a range of biopsychosocial issues faced by obstetric/gynecologic cancer patients, and some strategies to support the provider's patient population directly and on a larger scale within the institution or practice.

Background: Distress in Cancer

In the past few decades, the term "distress" has become omnipresent in cancer care. In 2004, it was deemed the "sixth vital sign," after temperature, respiration, heart rate, blood pressure, and pain, by the Canadian Strategy for Cancer Control.2 The American College of Surgeons' Commission on Cancer mandated a distress screening standard of care by 2015 for cancer centers to maintain accreditation.3 Distress in this context encompasses physical, emotional, spiritual, and practical needs. The National Comprehensive Cancer Network defines distress as:

A multifactorial unpleasant emotional experience of a psychological (cognitive, behavioral, emotional) social, spiritual nature that may interfere with the ability to cope effectively with cancer, its physical symptoms and its treatment. Distress extends along a continuum, ranging from common normal feelings of vulnerability, sadness, and fears to problems that can become disabling, such as depression, anxiety, panic, social isolation, and existential and spiritual crisis.4

Although many cancer centers struggle to implement effective screening programs, they are imperative, as up to 43% of cancer patients report clinically significant distress over the trajectory of their illness, from the time of diagnosis through death or survivorship. Significant psychosocial distress can have a lasting impact on everything from cognitive and emotional functioning to quality of life, and even cost of care. So, what can providers do? And how can they identify distress and other biopsychosocial needs in an already time-limited visit?

Evaluating Distress

Cancer is a diagnosis with many psychosocial adverse effects, which impact the entire family unit. Psychosocial issues should be evaluated and addressed beginning at the time of diagnosis and throughout the trajectory of care, either through time of death and bereavement or into survivorship.4 It is important to keep in mind that anxiety, depression, or any type of distress can present at any point throughout the continuum of cancer, so periodic reevaluation is critical. Evaluation should be continued into survivorship as many patients experience increased distress after treatment is complete. An initial evaluation of distress at time of diagnosis can provide a baseline for the patient. Offering a variety of psychosocial services, including social work, psychiatry, dietetics, financial assistance resources, and supportive medicine (palliative care), to address these needs, has the potential to have a significant impact on the quality of life of cancer patients.

Patients with cancer often present with complex psychosocial needs, including depression and anxiety, substance use disorder, and acute practical situations such as homelessness. Any preexisting psychological and social issues, such as low income, weak or absent social supports, or lack of health insurance, can exacerbate the emotional distress associated with a cancer diagnosis.4 Additionally, many individuals and families will encounter new problems after a cancer diagnosis. For example, illness or treatment may cause a patient to lose their job completely or lead to decreased income or loss of health insurance.

It is critical that a holistic evaluation is completed to provide patient-centered care. Evaluation may be completed via a survey in an electronic medical record portal before a visit, or on paper in person at the time of visit. A clinical social worker is often skilled at addressing most psychosocial needs or making appropriate referrals. Validated tools are widely available to evaluate distress and biopsychosocial needs, including the NCCN Distress Thermometer (DT), the Hospital Anxiety and Depression Scale, the Edmonton Symptom Assessment Scale, and the Patient Health Questionnaire-9, among others. Many of these are screening instruments, the outcomes of which may initiate a process of further psychosocial evaluation and referrals.

Several of the aforementioned tools can be self-administered via an online portal or on paper, or with minimal help from staff. Therefore, these are cost-effective tools, which may illuminate underlying issues. The scores from these tools can be incorporated into the patient charts and used as physician "talking points." Engaging in such biopsychosocial needs and addressing whether or not they have improved over time may deepen the patient-provider relationship and could increase patient satisfaction.5

The DT includes an 11-point scale ranging from 0 (signifying "no distress" to 10 (signifying "extreme distress"), accompanied by a checklist of individual problems. A DT score of 4 or greater generally indicates follow-up would be beneficial to the patient. In women receiving chemotherapy for gynecologic cancer, a large percentage may be distressed at levels high enough to warrant further evaluation.5 Additionally, many patients with gynecologic cancer undergo treatments, which can be quite invasive, resulting in infertility, treatment-induced menopause, and scarring, among other issues-all of which can understandably cause distress. Concerns about altered appearance and negative changes in relation to self-perceptions of femininity have also been correlated to increased distress.6

Women with gynecologic cancers also may report higher levels of distress due to the sensitive nature of their cancer, possibly preventing them from seeking support. Female breasts and breast cancer, for example, are discussed more often in public, versus female genitals and internal organs, which remain taboo. Women may also feel shame if their cancer is related to a sexually transmitted infection (cervical cancer or vulvar cancer). These issues, in addition to impact on sexual functioning and fertility, can cause an onslaught on personhood and identity.7 A gynecologic cancer diagnosis may affect a patient's personal, social, and sexual lives, which in turn increases distress. To further contextualize this issue, a study from City of Hope demonstrated that patients with gynecologic cancer present with higher levels of distress than breast cancer patients. Additionally, the authors found that breast cancer was often diagnosed at an earlier stage than gynecologic cancers, and that patients with gynecologic cancer report higher levels of problem-related psychosocial distress than breast cancer patients.7

Physical Impact on Mental Health

A cancer diagnosis and associated treatment can have a variety of physical adverse effects, which can be detrimental to a patient's mental health and coping. Some of the greatest physical stressors, which can exacerbate emotional distress, include:

* Pain;

* Fatigue;

* Difficulty sleeping;

* Constipation/diarrhea;

* Nausea; and

* Changes in appearance.

Cancer-related fatigue (CRF) is a distressing, persistent, subjective sense of physical, emotional, and/or cognitive tiredness or exhaustion related to cancer or cancer treatment that is not proportional to recent activity and interferes with usual functioning, and is one of the most distressing adverse effects to cancer patients.8 This means that for someone who is not in treatment for cancer, a simple activity like walking to the mailbox is an easy daily activity; but for someone in treatment for cancer, this task may prove truly daunting and exhausting. Patients find this symptom highly distressing, often even more so than pain or nausea, which can typically be managed by medications. Fatigue is highly prevalent; up to 80% of those receiving active chemotherapy or radiation reported CRF, which can extend into survivorship.8

Reevaluation of a pain management strategy may be implicated in the setting of chronic or cancer-related pain. Unrelieved pain can interrupt sleep and lead to activity intolerance, which in turn can worsen fatigue. Unrelieved pain can also cause emotional suffering, depression, and anxiety. Similarly, untreated depression or anxiety can impact energy levels; therefore, it is important for providers to evaluate potential depression and anxiety thoroughly, in addition to the common diagnosis "adjustment disorder." Talk therapy, cognitive-behavioral therapy, medications, journaling, and meditation can all be helpful in addressing depression and anxiety and some types of cancer-related pain. A palliative care expert would also be indicated, as they specialize in treating adverse effects of cancer and cancer treatment, and have the best experience to ameliorate physical side effects.

Changes in Physical Appearance

Many types of cancer are associated with physical changes, ranging from surgery and reconstruction to weight loss or gain. Oftentimes, individuals confronting physical changes find these very distressing. Patients may suddenly notice that their clothes are either too small or very large. Weight loss is associated with illness, and increases family and friends encouragement to eat, which can feel emotionally overwhelming. Weight gain is a less expected adverse effect, which patients find surprising and upsetting. Weight loss or gain can be more challenging to any patients who have histories of eating disorders.

For many women, one of the most highly distressing adverse effects of cancer treatment is chemotherapy-related hair loss (alopecia). Although alopecia is a common adverse effect, it is often underestimated how much of a psychological impact it has on patients. Many patients find alopecia to be traumatizing and stigmatizing, impacting their own self-perception and how they are perceived by others.9 As alopecia is a visible adverse effect often associated with cancer, individuals may feel it discloses their cancer or "sick" status to the world. The result may be feelings of shame, anger, embarrassment, sadness, helplessness, or even fear. Alopecia may also cause low self-esteem, anxiety, or depression.9 Head coverings and wigs are frequently used but are still visibly associated with cancer. Providers are often unaware of the great lengths to which patients may go to prevent or cope with hair loss.

In addition to physical changes, which impact body image, the necessity of an assistive device may cause a range of difficult emotions. Many patients may initially be hesitant to use a cane, walker, wheelchair, or other device, even if it might improve their quality of life. Individuals sometimes find that use of an assistive device causes them to feel old, sick, or frail, an individual with whom they cannot identify. Oftentimes providers, family, or friends encourage patients to focus on survival rather than physical changes. This can diminish or invalidate patient distress, causing patients to withhold discussing these issues, as they may be perceived as trivial or vain. It is important for all parties to offer opportunities for patients to discuss and validate these feelings. Creating a sense of safety and openness may improve the patient-provider relationship and increase patient satisfaction.

Practical Issues and Mental Health

Although practical issues are not often evaluated by the physician, they can have an outsized impact on clinical care and patient adherence to treatment plans. Patients often do not self-report these issues, as they may not perceive them to be medical in nature. Practical needs include issues such as:

* Transportation;

* Food security;

* Child care;

* Housing security;

* Insurance;

* Financial needs;

* Work/school; and

* Social support.

Asking about social support at the first visit and before implementing a treatment plan is paramount. Weak social support can translate to weakened coping skills and increased mental illness, isolation, and risk of developing depression, and can impact transportation resources.4 Lack of or mode of transportation should be taken into account when creating a treatment plan; inability to physically get safely to treatment will impact patient compliance. Issues such as transportation may either seem minor or not taken into account, but can have a major impact on treatment outcomes. Transportation programs are available in most major metropolitan areas. Friends, family, and volunteers from the American Cancer Society or a religious group may be able to assist with transportation. The stressors associated with logistical issues, and weak social support, may increase preexisting mental health conditions. If social support is limited, making connections to online or in-person support groups is one way to help. A plethora of groups exist and can be identified by a social worker or self-identified by the patient. Technology such as Zoom allows the creation of groups for even the most rare or niche disease, as patients can connect despite their geographic separation or ability to ambulate, etc.

Regular check-ins on patient financial and job security, either by physician or social worker, are relevant. Ongoing illness and treatment may impact job security, thereby causing loss of health insurance and/or income loss. Although some employers may offer COBRA, patients may not understand benefit options or not be able to afford COBRA premiums. Equally important, understanding disability or unemployment applications is a challenge, and navigating the medical records department in health care to have paperwork completed can be onerous. Each of these issues has a shockwave of effects on patient care.

"Scanxiety"/Fear of Recurrence

Throughout treatment and survivorship, there are commonly experienced peaks in anxiety. One such point is before scans, often described as "scanxiety." Even after achieving NED status (no evidence of disease), worries and fears may persist for years, well into survivorship. Women may be told that they are "cured" and continue to fear the real possibility of recurrence. This causes a sense of "living in limbo," facing uncertainty, and can result in an existential crisis of small or large scale.10

Even women who understand the risk of recurrence may experience a recurrence as unexpected and shocking.10 This is meaningful, given that in certain gynecologic cancers, for example ovarian cancer, the risk of recurrence is extremely high. An initial diagnosis may present the opportunity for cognitive dissonance, dissociating from one's own mortality. On the contrary, a recurrence directly speaks to one's own mortality. One qualitative study demonstrated that women who completed treatment saw themselves as "strong survivors" but when these women faced recurrence they thought of themselves as failures, the recurrence causing feelings of guilt, fatalism, and alienation.10

Patients may experience great loss and grief when presented with recurrence of disease. These losses include the sadness over "failed" treatment, the knowledge of having to withstand further treatment and additional adverse effects, and, most of all, the loss of a future they may have imagined. This greatest loss not only includes a future without cancer, but may include many significant life events that patients now will imagine missing out on. This seems especially true for women with young children.

In addition to "scanxiety" when approaching scans, many patients experience heightening anxiety over any physical symptoms. With certain types of gynecologic cancers, such as ovarian cancer, the symptoms before initial diagnosis are often vague, such as bloating and fatigue. These common physical issues may become difficult to tease out from a cancer recurrence versus everyday life. Bloating from a salty meal may trigger an emotional crisis and angst. Therefore, new symptoms can become emotionally debilitating to patients, as they cause overwhelming distress and fear.

Before scans it is common for patients to feel irritable, tearful, sad, or scared, among other emotions. Some women cope with scans with 1-time doses of anxiolytics the day of their scans. Others may use methods such as deep breathing or tapping for days and weeks leading up to scans. Some patients do well by simply discussing their fears and having open communication with their medical providers to cope with their "scanxiety."

Strategies to Reduce Distress

Once identified, there are a variety of both drug and nondrug interventions available in the management of distress.11 Because many indicators of distress are practical needs, being able to link patients and families to concrete resources is vital. Typically, a social worker, case manager, or patient navigator is involved in this type of linkage, but physicians may be the ones to initially identify these stressors. In addition to staff housed within a medical institution, there are a plethora of local and national resources to help patients navigate some of these practical needs, including insurance and financial issues. Some of these easily accessible resources include the American Cancer Society, CancerCare, Cancer+Careers, the Patient Advocate Foundation, the National Ovarian Cancer Coalition, Gilda's Club, and Cancer Support Community, among others. Many of these resources also offer support groups for patients and caregivers. Social support has been shown to reduce distress and anxiety, whereas loneliness and alienation can exacerbate these issues; therefore, tapping into a support group or connecting with friends and family in some meaningful way can be critical.6

Medications for anxiety and depression are frequently prescribed in the oncology setting, either by an oncologist, palliative care specialist, or psychiatrist. Although often helpful, sometimes medication management is not enough to fully support a patient's needs. Talk therapy with a mental health professional can be helpful in addition to medication. Insurance may present a significant barrier to therapy-either because patients are uninsured, underinsured, mental health providers do not accept their insurance, or Medicaid/Medicare limits patients' choices of providers. Being a champion of integrating psychosocial care, including social work, psychology, and psychiatry into your practice, can have a major impact on patient outcomes.

Provider education can go a long way to reduce patient distress as well; this translates to having honest and frank discussions with patients and their families about what to expect in terms of adverse effects, and treatment goals. Normalizing the patient experience (ie, "many patients lose their hair temporarily and struggle with this") also prepares patients for adverse effects and may improve their sense of self-efficacy.9

Additionally, patients can practice good sleep hygiene, meditate, journal, and practice deep breathing. There are a variety of relaxation and breathing apps available to patients who have access to the Internet at home and a smartphone. Some of these include Calm, Headspace, and Tapping Solutions. Additionally, the app CBT-i Coach, a mobile phone application originally developed for Veterans, is an informative and easy-to-use app to augment care and help with insomnia; it provides education and a structured program to work on sleep hygiene.

Complementary medicine is another avenue for stress reduction. This may include acupuncture, Reiki, or massage, among other practices. Some cancer centers are able to offer these services on-site, and many community practitioners offer services to cancer patients on a sliding scale. Yoga, which can be practiced at home or in-person, can be modified for physical limitations. There are a variety of free and low-cost online yoga classes.

Finally, care at home can greatly reduce stress for patients and their caregivers. This may come in the form of a home health aide (HHA), home nursing, palliative care, or hospice. These in-home forms of care furnish a variety of services dependent on patient need, and can provide education, support, respite, and reduction in caregiver burden. When appropriate, utilizing these resources can be not only pivotal to patient care, but also provide "eyes and ears" in the home to improve communication with the providers about realistic daily patient (and family) life. Patients and caregivers may especially benefit from something as simple as medication education, or an HHA to help with tasks around the house, such as food preparation or laundry. Additionally, hospice, when appropriate, has been shown to increase quality of life and longevity, and should be encouraged.12

A Note About Trauma-Informed Care

Often there is a focus on diagnosis and urgency to treatment when physicians first meet cancer patients. Asking about a history of abuse is rare in this setting, but it is not uncommon that many of our patients have a trauma history and become retraumatized by medical examinations and cancer treatments. In fact, many of the sterile clinical procedures patients with gynecologic cancer in particular are facing tend to be similar in nature to their earlier trauma.13 For example, treatment with radiation, chemotherapy, anesthesia, and surgery may include elements such as darkness, being silenced and immobilized, exposure of sexual organs, penetration, infliction of pain, and, ultimately, feeling as if under someone else's control and completely vulnerable.13

Having a knowledgeable team, including the right players such as social work, psychology, and psychiatry, and taking a trauma-informed approach to care can greatly improve the provider-patient relationship, and improve outcomes. Adults who were traumatized as children can become stuck in fight or flight mode, or in chronic shutdown, and the right approaches are invaluable to providing their medical and psychosocial care.14 Using a trauma-informed approach can help build a relationship and also benefit providers; the approach would include acknowledging the potential for secondary traumatization and compassion fatigue and include a role for self-care, essential to providing this type of care at the highest level.

The first step in providing a trauma-informed approach is to understand how to ask about a history of abuse,15 using nonjudgmental phrasing such as, "I am asking you this because some people with a history of abuse may struggle with certain medical treatments." Another key principle is the concept of collaboration and mutuality, or the idea that partnering can level the power differences between the health care team and the patient. Healing can occur in the context of a meaningful sharing of power and decision-making. Taking a trauma history very early in the patient-provider relationship can help prevent suffering and encourage a gentle and humane experience for the patient.

Conclusion

Psychosocial distress is not only commonplace but expected after a cancer diagnosis. Although only one component of cancer care, distress has a wide-ranging impact on patient adherence to treatment and outcomes, and all providers have the ability to evaluate and provide interventions or resource linkages to reduce distress. Patients with gynecologic cancer face unique stressors related to the intimacy of their illness site, including physical changes and challenges with identity and personhood. There are a wide range of strategies to reduce distress for patients and their family members, and working together with the appropriate team members can improve patient satisfaction and outcomes.

Practice Pearls

* Distress is a multifactorial experience, which extends along the continuum of cancer care and should be evaluated continuously.

* Untreated mental health issues and distress can have an impact on patient treatment and outcomes.

* Women with gynecologic cancers may report higher levels of distress than individuals with other cancers, such as breast cancer.

* The variety of readily available strategies to reduce distress includes:Resource linkages (ie, social work and support groups);Meditation;Journaling;Therapy (ie, cognitive-behavioral therapy);Medication;Complementary medicine; andHome nursing.

* Trauma-informed care is a critical skill set for treating patients with gynecologic cancer.

REFERENCES