Psychosocial Distress and Anxiety in Lung Cancer

Background

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 psychosocial distress and anxiety on health outcomes have been increasingly reported in the literature. Current research shows that survivors of lung cancer are at greater risk for psychosocial distress than other cancers. 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.

Defining Distress and Anxiety

Cancer-related distress and anxiety span across a range of emotions and may fluctuate throughout an individual's disease course. Distress is defined as a subjective experience that can cause disturbances in an individual's quality of life and is defined as “a multifactorial unpleasant experience of a psychological, 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, such as excessive worrying and fear, are often described as a normal and an adaptive reaction to cancer. When gone unchecked, these symptoms may develop into prolonged and intense worrying and fear, impacting daily functioning and may be classified as a psychological disorder.

Distress and Anxiety in the Lung Cancer Population

Lung cancer accounts for nearly 25% of cancer deaths in women and men, more than breast, colon, and prostate combined. People with lung cancer have been identified as having greater distress than other cancers, at rates as high as 43.5%, due to most cases being diagnosed at advanced stages with increased physical and psychological symptom burden. Increased psychological distress has also been correlated to lung cancer, suicidal ideation, hopelessness, low quality of life, and poor body image.

The prevalence of lung cancer and the high likelihood of encountering these individuals during the rehabilitation process necessitate the pressing need for health care professionals to increase their awareness and knowledge of the signs and symptoms of distress and anxiety and include screening, assessment, and intervention into standard practice. 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.

Routine assessment of psychosocial distress allows individuals and health care professionals to regularly communicate about sources of distress throughout the continuum of care, especially with survivors being more likely than ever to undergo treatments, such as chemotherapy, surgery, radiation, and immunotherapy, which may trigger distress and anxiety at various time points along their care continuum, including at diagnostic workup, active treatment, advanced stage and metastatic disease, and end-of-life. When unaddressed, distress can reduce the quality of life and impact cancer survivorship, with the potential for decreased compliance with therapies and exacerbation of symptom burden.

Psychosocial Needs of the Lung Cancer Population

While certain triggers for distress and anxiety may be more common or generalizable to the larger oncology population, there are certain triggers specific to the lung cancer population which must be considered to provide the most holistic and individualized care possible.

Lung Cancer Stigma

A majority of individuals with lung cancer (95%) report feeling stigmatized by their disease, leading to shame, guilt, and fear of discrimination. ^, Research on lung cancer stigma has indicated associations between lung cancer stigma and internal self-blame, perceived self-infliction, impaired patient–clinician communication, limited engagement in prevention and early detection interventions, poor self-esteem, and mental maladjustment. ^, ^, Furthermore, lung cancer stigma was a strong predictor in delayed medical help-seeking behavior after symptom onset, which is a critical issue in a diagnosis with such a high mortality rate and exponential disease growth.

Impact on Treatment Adherence

Studies have shown that underlying distress or anxiety can inhibit progress and even impact treatment adherence. It has been suggested that adherence to screenings can be impacted by lack of awareness of screening benefits, screening fatigue, financial costs, and proximity to referral centers. It is vital for the multidisciplinary team to further evaluate the possible underlying causes of noncompliance, such as health literacy levels, lack of understanding of the potential impact on quality of life, and psychosocial concerns. A full biopsychosocial assessment of a patient is warranted in order to capture a complete profile of an individual and aid in joint decision-making processes between the provider and the patient. 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. A study analyzing motivations for nonadherence to lung cancer screening in the military population found that a majority of patients were lost to follow-up due to communication difficulties, and recommendations were made to improve contact via multiple avenues. This example of unintentional nonadherence due to perceived lack of follow-up demonstrates how improving efficiency and communication in our health care systems can lead to improved care for patients.

Advanced Lung Cancer and End of Life

Patients with advanced cancer have reported high levels of distress due to feelings of hopelessness, impaired emotional functioning, and body image distortions. Furthermore, many individuals with end-stage lung cancer capitulate to their disease while also experiencing poor quality of life, despite the medical advancements in lung cancer care. When addressing the goals of care for individuals with advanced lung cancer, providers must recognize when the focus of treatment should be aggressive life-sustaining measures versus symptom management and preparation of the patient and family for a progressive and inevitable decline. Maintaining clear and honest lines of communication can help aid in joint decision-making in order to ensure that proper palliative care is provided to patients who are at very high risk for distress and severe psychological symptoms.

Immunotherapy and Targeted Therapy

Advancements in the treatment of lung cancer have resulted in populations with longer periods of disease control despite metastatic disease. This emerging population of survivors living beyond their original prognoses faces a unique set of challenges, including persistent toxicities related to treatment, uncertainty surrounding prognosis, and scan-related anxiety. Furthermore, individuals with long-term clinical trial participation have reported negative quality of life due to frequent surveillance and the need for regular hospital attendance. A comprehensive qualitative study looking at the lived experiences of lung cancer patients on immunotherapy identified several themes among this cohort of survivors, some of which included the liminal experience of living in limbo as well as the lack of established and practical information on immunotherapies from providers. Providers are encouraged to increase their awareness of the known impact of immunotherapy and target therapies in order to weigh the values of treatment as it relates to quality of life.

Fear of Recurrence

Fear of recurrence (FCR) is a prevalent psychological burden that may manifest as a normal response to cancer to a pathological response. The potential ramifications of an availability of treatment options and increased survival rates include an increase in psychological burden over a prolonged period of time due to fear of disease recurrence. Long-term treatment and psychosocial care are warranted in order to ensure positive adjustment and improved quality of life during and after treatment. A systematic review analyzing factors affecting FCR across different cancer populations found strong associations between FCR and younger age, physical symptoms, and poor mental health–related quality of life. The direct impact of distress on FCR still needs to be studied in the literature. However, maintaining honest and open lines of communication and providing adequate follow-up care must be implemented to help patients navigate potential challenges with symptom management and the trajectory of treatment.

Caregiver Distress

Caregivers play a pivotal role in the promotion of symptom management and provision of psychosocial support for individuals with lung cancer. In addition to providing instrumental care and support, caregivers are often tasked with clinical responsibilities, including postsurgical drain management, administration of medication, and assistance with activities of daily living. However, the psychosocial needs of the caregiver may often be overlooked, as care for the patient is prioritized. It is important to consider that caregiver burden and distress can be affected more by the patient's quality of life than the stage of the cancer. Many caregivers of patients with lung cancer have reported significant distress due to the uncertainty of their role as a caregiver and how to manage an uncertain future.

Caregiver burden and distress can increase over time as disability increases with progressive disease or intensified symptom burden. In order to ensure that the needs of caregivers are met as they progress with the patient along the continuum of care, all members of the interdisciplinary team are recommended to provide caregiver support and actively engage caregivers at all levels of care in order to train and equip them with the skills needed to care for their loved ones effectively. Health care professionals may establish welcoming atmospheres for caregivers to encourage open communication to discuss special needs and identify areas for more support.

Screening for Distress

Screening as Preventive Medicine

The goal of preventive medicine, as defined by the American Board of Medical Specialties, is to promote health and well-being and prevent disease, disability, and death. Screening should be viewed as a powerful preventive tool in health care in order to increase awareness of the prevalence of distress while identifying methods to reduce distress. The National Comprehensive Cancer Network (NCCN), the Institute of Medicine, and the American Society of Clinical Oncology (ASCO) have made recommendations for the inclusion of screening, assessment, follow-up, and treatment of psychosocial distress as a quality care standard in routine cancer care. The U.S. 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.

The unique dynamic of lung cancer and the stigma associated with lung cancer symptoms and diagnosis necessitates the need to integrate early and regular screening of psychosocial distress and anxiety into routine care regardless of practice setting, size and type of institution, or patient prognosis. Screening for distress at or near the time of diagnosis and rescreening throughout the treatment continuum may provide increased opportunities to address the consequences of psychosocial concerns and improve quality of life. By preventing and reducing distress and anxiety, health care professionals can take positive steps toward reducing 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

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