Luanne sat in our respective offices during her medical appointments, often tearful and overwhelmed. She was a 41-year old woman diagnosed with breast cancer and undergoing a bilateral mastectomy, as well as adjuvant docetaxel (Taxotere®; Sanofi) and cyclophosphamide (Cytoxan®, Neosar®) and radiation therapy. Between these intensive medical treatments and caring for her children at home, lack of strong partner support, and the recent death of her sister, she understandably was struggling not only with the physical but also with the emotional symptoms of her cancer journey.
Luanne’s story is not unlike others we’ve encountered as practicing clinicians. Cancer-related distress is common and a label that encompasses the range of psychological symptoms patients experience related to a cancer diagnosis. These symptoms may present during various phases of the cancer control continuum including at the time of diagnosis, during treatment, adjustment to survivorship, or processing end of life. Acuity and the manifestation of distress can vary among individuals based on interpersonal factors, cancer type and stage, age and gender, and the presence of other psychosocial stressors. For some patients, pre-existing mental health needs are exacerbated by a cancer diagnosis whereas other patients may experience psychological challenges for the first time. For the purposes of this editorial, we will primarily focus on the most commonly experienced symptoms – anxiety and depression – although providers should be aware of substance abuse, insomnia, grief, and acute stress symptoms.
An increased rate of psychiatric disorders
Persons with cancer are more likely to experience psychiatric symptoms, even demonstrating increased rates of psychiatric disorders 10 years after diagnosis. Prevalence rates vary based on assessment method as well as the time point of treatment and are further impacted by various demographic factors. When examining rates of non-specific but psychologically and clinically significant distress, like Luanne’s, rates may be close to 50 percent.
Oftentimes, depression and anxiety are assumed to be an inevitable association with a cancer diagnosis and thus underreported by patients and under-assessed by providers. A common mantra heard “Of course I’m [my patient is] depressed, I [they] have cancer” embodies this fallacy. In Luanne’s case, when psychological support was first introduced, she declined and instead said, “I just have to figure this out” and reported lack of time as a barrier. However, she began to have difficulty completing her medical treatments as she reported frequent pain and fatigue which – even with pain medication or “sufficient” time-lapse following chemotherapy – did not improve. At times, this was debilitating and her quality of life was impacted. The prevalence data cited reflects that although common, cancer-related distress should not be assumed inevitable and thus, without intervention.
Thankfully, as medical treatments for cancer continue to advance so too do the options and resources to address mental health for cancer patients, and the often arduous treatment journey and survivorship transition. Based on research and real-world evidence, a plethora of data affirms the efficacy of psychotherapy and psychotropic interventions on reducing psychiatric symptom severity and improving quality of life. There are now also mental health services designed to treat specific aspects of the cancer experience such as fear of recurrence, self-image following surgical resections, and acceptance of a terminal diagnosis. This targeted approach has furthered our ability to refine treatment of the symptoms of distress a cancer patient may experience, and for providers at larger academic or private medical centers, there may be health psychologists available that are dedicated to meeting the needs of these patients. Community-based resources are also often available to help patients including support groups and wellness centers.
A rapidly evolving landscape
We feel it is also important to note that the landscape for medical and psychiatric outreach has rapidly evolved, especially over the last 18 months. Previously utilized infrequently as insurance coverage and lack of infrastructure created barriers, during the COVID-19 Public Health Emergency, Health and Human Services encouraged telehealth usage with coverage waivers from Medicare and Medicaid, followed quickly by many private payers. This has allowed for considerable gains to engage patients who have typically been outside the scope of mental health services. There are also exciting new treatment advancements in psycho-oncology such as through prescription digital therapeutics. These digital medicines build on the existing treatment paradigm and utilize technology to provide around-the-clock access to psycho-oncologic care for all patients.
Advances in services and treatments for cancer-related distress have had positive impacts on oncology patients. However, there are still multiple challenges associated with adequately recognizing and treating psychological symptoms. First and foremost, there are challenges in assessing and diagnosing distress. With cancer providers facing increasing demands on their clinical time and fewer resources to capture all aspects of an encounter, it may be challenging to even find an opportunity to solicit patient experiences. Although some governing bodies mandate the need to address psychological health (i.e., the Commission on Cancer Standard 5.2 on Distress Screening), the tools to do so are not universal nor is there a structured timeline of when this should be assessed. For a busy office, identifying an appropriate distress screening tool and ensuring it is universally implemented and repeated can stress the limits of an already overwhelmed practice.
Especially challenging is reaching those individuals with socioeconomic barriers. Although delving into barriers for mental health and specialized care for individuals in underserved populations is worthy of its own focus, for the sake of this article we will offer a brief touchpoint. Patients living in a rural area not only travel a longer distance to access cancer care while being more likely to report transportation and financial difficulties but are often under-referred and under-assessed for cancer distress due to a lack of treating providers. This dearth of resources occurs in the context of studies which indicate they may also face higher rates of depression and anxiety. Patients within ethnic minority groups also face obstacles towards addressing cancer distress. This may be due in large part to communication barriers between patients and physicians in which there may be implicit biases and historical exclusion from partnerships within medical care. In turn, patients are often less likely to report any symptoms and leave with unmet needs, especially psychological, given the added layer of stigma which is often applied towards mental health.
Further adding to the complexity, if an existing distress screen does not exist, providers must rely on patients self-identifying as experiencing psychological symptoms. Patients may struggle to do this for multiple reasons: feeling they do not want to “bother” their physician or that this is not something relevant to their cancer care, stigma towards mental health, having a support person in the room whom they do not want to disclose to, lack of mental health literacy to recognize psychiatric symptoms or assuming the way they feel is expected and thus without intervention. In addition, some symptoms may be ambiguous and similarly minimized by patients who would prefer to focus on physical etiologies (i.e., patients attributing fatigue to chemotherapy rather than to depressive symptoms).
Unable to respond to a patient’s need
Without screening, behavior may not be understood within its appropriate context. For example, non-adherence can commonly be a reflection of depression such as with Luanne who began to miss appointments, or a patient unable to discontinue smoking may be struggling with anxiety. Another challenge may be in the referral portion of distress screening. If a provider was made aware of a patient’s cancer-related distress, without a pathway to treat or refer the patient, they may feel unable to help. This concern arises often when providers share their apprehension asking about suicidality with an oft-repeated question, “What do I do if they say yes?” This fear of being unable to respond to a patient’s need may make it more conducive to move away from the psychological domain.
Numerous organizations and accrediting bodies including the National Comprehensive Cancer Network, Association of Community Cancer Centers and American College of Surgeons Commission on Cancer urge and/or require cancer distress screening. It is assumed that barriers exist to doing so, namely in: creating buy-in from providers, lack of institutional support, and the feasibility of implementation. However, resources exist both in guidelines and suggestions from these same governing bodies.
Although we could never assume the practice that serves us well at Loyola University Medical Center (LUMC) is without its own flaws or that it is appropriate to all other settings, we would like to share what we have learned over our years of collaboration. Within our multidisciplinary clinics, new patients complete a Distress Screen measure developed in collaboration with a cancer partnership group in the Chicago metro area.
This screening tool triggers referrals to our Psychosocial Oncology providers and social workers and offers a physical symptom profile that may be addressed by their cancer provider or referred to physical therapy. The delivery of this tool is adapted within some clinics based on the makeup of providers and the flow of patient encounters. For example, in one of our smaller clinics all new patients complete the Distress Screen during their chemotherapy teaching appointment with an Oncology nurse. It is then reviewed by a psychologist to generate the appropriate referrals. We have also been working with our EMR to begin administering the Distress Screen electronically (i.e., either completed by patients at home prior to their appointment or on a tablet at the time of their appointment). This in turn will automatically generate “Best Practice Alerts” to streamline the process of placing referrals. Outside of distress screening with new patients, we have developed strong collaboration between our Psychosocial Oncology and Oncology providers. This is maintained through attendance and discussion at site specific tumor boards and service meetings as well as in routing notes and observations after patient encounters. Our Psychosocial Oncology providers often present at Grand Rounds and division meetings on mental health-related topics ranging from Adherence to Medical Trauma, which both offer psycho-education and continue to build on the collaborative nature of our patient care. Because of the strength of our partnership, the validity of our intent to treat the entirety of a patient is made evident and can decrease a patient’s hesitancy to engage with mental health services.
In Luanne’s case, and through discussion with her care team, she began to realize the importance of treating depression and anxiety as side effects of cancer care, and with the same importance as nausea and low platelets. Her cancer-related distress had impacted her overall health outcomes, and she knew something had to change. She agreed to reach out to the mental health resource provided and returned for her three-month appointment post-chemotherapy and after radiation was completed. Although she still described many challenges to feeling “normal” and was frustrated that she was not yet able to do certain activities, she was less tearful and her overall affect was brighter. She still reported joint pain and fatigue associated with her endocrine therapy but shared that she is motivated to remain compliant with the recommended course and learned ways to cope during her psychotherapy sessions. She also joined an exercise program through a cancer support organization and found it had improved her stamina and helped her to normalize her experience compared to others. In addition, she found it helpful to talk about her sister’s death as before she felt the need to avoid her grief to “be positive” as encouraged by those around her. While Luanne remained anxious about her cancer recurring, she planned to continue her therapy sessions to target this concern.
Mental health and cancer outcomes
We know morbidity and mortality increase when mental health symptoms are present, and in our clinics, we see on a routine basis how mental health affects cancer outcomes. For patients experiencing depression, they may lack the initiative to adhere to their complicated medication and health regimens. Patients with a trauma history may have difficulty undergoing the necessary physical exams or invasive procedures associated with their treatment and thus, not attend. Those with substance abuse may find that the short-term avoidance offered by alcohol or illicit substances is more tolerable than facing their prognosis. In each one of these scenarios, it is easy to imagine that the physical and mental fortitude, as well as the effective support network a patient would need to undergo the rigors of cancer care, is difficult to access. This in turn can influence treatment efficacy and disease progression or follow-up and disease recurrence. However, we can address cancer distress by asking about it and building networks between physicians and mental health providers to address needs.
We owe it to our patients to acknowledge what is being asked of them, both physical and emotional and remind them they are not in it alone.
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