Evolution of psycho-oncology reflects ‘emotional, spiritual and social level’ of cancer care
The physical impact of a cancer diagnosis often is at the forefront of each patient’s care plan.
However, an increasing body of evidence reveals an equally important emotional consequence.
An analysis by Linden and colleagues of more than 10,000 patients with cancer showed 19% exhibited clinical levels of anxiety and another 22.6% had subclinical symptoms. Further, 12.9% exhibited depression symptoms, and another 16.5% exhibited subclinical symptoms.
“Psychological symptoms have a greater impact than just making a patient feel poorly,” William F. Pirl, MD, MPH, associate director for cancer support services at Sylvester Comprehensive Cancer Center and associate professor of psychiatry at University of Miami Miller School of Medicine, told HemOnc Today. “Very compelling data have been accumulating that show patients with cancer and depression have much worse survival.”
Greater recognition of the importance of mental and emotional health has contributed to a rapid proliferation of psychosocial oncology services. A survey of 146 cancer treatment institutions commissioned by the American Psychosocial Oncology Society (APOS) showed 90% provided psychosocial services to patients with cancer.
However, the report revealed that patients with cancer were not routinely screened for symptoms of distress, and that psychosocial services were not adaptable to ethnic, cultural and linguistically diverse populations.
“In this age of precision medicine and tailored treatments, addressing a patient’s mood should be part of cancer treatment, especially for patients with depression,” Pirl said. “More needs to be done beyond simply documenting a history of mental illness or addictions in a problem list.”
HemOnc Today spoke with psychiatric and psychosocial oncologists about the need to integrate psychological services into cancer treatment; appropriate measures for treating patients with severe psychiatric conditions; and the observational and interventional strategies that should be implemented for at-risk populations, such as survivors of childhood and young adult cancers.
Evolution of psycho-oncology
The movement to establish psycho-oncology as a subspecialty dates back more than a half-century. Memorial Sloan Kettering Cancer Center created a psychiatric oncology department in 1952 — a precursor to its department of psychiatry and behavioral sciences.
The emergence of psycho-oncology as a discipline has accompanied shifting perspectives on how cancer should be treated, Isabel Schuermeyer, MD, director of psycho-oncology at Cleveland Clinic Taussig Cancer Institute and APOS president, told HemOnc Today.
“It used to be, not long ago, that people didn’t tell their patients they had cancer,” Schuermeyer said. “We didn’t have a lot of great treatments then, and there was concern that the knowledge itself would be too psychologically damaging — that it would be telling patients they had a death sentence.”
Treatment advances since the 1970s helped more patients with cancer survive and led to greater awareness of their neuropsychological needs after cancer therapy.
A multinational collaborative of psycho-oncologists founded the International Psycho-Oncology Society in 1984, and APOS in 1986. These professional societies helped define the mission of psychosocial treatment as a distinct service within oncology.
“Psycho-oncology is not just psychiatry,” Schuermeyer said. “It is an interdisciplinary field. A psycho-oncology unit might include psychiatrists, psychologists, social workers, art therapists and music therapists. Not every patient is going to need to see a psychiatrist, but just about everyone is going to have some form of distress when they receive a cancer diagnosis.”
The growing awareness of the patient experience has driven some of the increasing interest in the field of psycho-oncology, Joseph A. Greer, PhD, assistant professor of psychology at Harvard Medical School and program director of the Center for Psychiatric Oncology & Behavioral Sciences at Massachusetts General Hospital, told HemOnc Today.
“Patients have a desire to be seen as a whole human being,” Greer said. “A cancer diagnosis affects them not only on a biological level, but on an emotional, spiritual and social level. There is a greater recognition in the oncology community of the benefits of supportive care services for patients.”
Appropriate integration of supportive services can increase value in cancer care.
“A lot of studies show how expensive cancer care is, especially as patients approach the end of life,” Greer said. “Individuals who experience psychosocial distress are more likely to have higher rates of utilization and greater cost of care, without necessarily achieving better clinical outcomes. From a quality-of-life perspective, improving overall care holistically and enhancing quality of life can help patients optimize resource utilization in a manner that is most effective, which would ideally reduce costs.”
The focus on value has triggered a greater emphasis on emotional health, Kristine A. Donovan, PhD, MBA, associate member of the department of supportive care medicine at Moffitt Cancer Center, told HemOnc Today.
“Cancer has always had a psychosocial — or human — side,” Donovan said. “Fortunately, this has only become more appreciated over time. The focus has shifted primarily because of the health care system’s mandate that oncology be accountable for providing high-quality care and decreasing the use of unnecessary resources. The shift reflects the degree to which psychosocial The shift reflects the degree to which psychosocial care improves oncologic care as a whole.”
In 2014, ASCO issued a clinical guideline for the screening, assessment and management of depression and anxiety in patients with cancer. The guideline recommended that all adults with cancer and survivors of cancer undergo routine screening for symptoms of depression and other mental health conditions.
“The ASCO guidelines recommend the use of the Patient Health Questionnaire–4, which is part of a longer battery designed to screen for psychiatric disorders in primary care patients,” Pirl said. “It has two questions about depression and two questions about anxiety, and the answers to these questions should guide clinicians in identifying which patients require more evaluation.”
APOS, in conjunction with the Association of Oncology Social Work and the Oncology Nursing Society, published recommendations for appropriate screening interventions in Cancer. These guidelines attempt to identify a protocol for appropriate screening timelines.
According to the guidelines, a medical assistant can oversee screening data collection. A nurse then would review these data and identify patients who meet criteria for a follow-up assessment.
A social worker then should conduct the follow-up assessment and determine whether additional evaluation or referral is necessary.
Alternatively, an oncologist could perform these assessments.
These guidelines emphasize that a team-based approach is essential to provide quality psychosocial care.
“Often in the cancer clinics or in the community, we would want patients routinely screened using validated measures throughout their cancer care,” Greer said. “Based on that screening, patients would ideally have an opportunity for follow-up with supportive care services. That includes the opportunity to work with clinicians who can provide psychopharmacological consultation and counseling services. There is usually a mix of mental health professionals who are available to provide a variety of evidence-based interventions.”
National Comprehensive Cancer Network and Institute of Medicine guidelines recommend all patients with cancer be screened for emotional distress.
ASCO’s Quality Oncology Practice Initiative clinical registry measures suggest that, by the second office visit, emotional well-being should be assessed and action should be taken to address problems.
Researchers reviewed 25,058 charts from 300 practices across the United States to assess compliance with this measure in spring 2014. Overall, 75% of practices assessed emotional well-being by the second office visit, and 77% of providers documented a plan of action to address identified problems. However, mean scores of practices on this measure remained unchanged since 2009.
Patients will unnecessarily suffer if their providers do not address psychological symptoms, Donovan said.
“Negative psychological symptoms complicate the patient experience and make it more challenging for patients to cope with diagnosis and treatment,” she said. “This has the potential to lead to poor treatment adherence, poor illness-related outcomes and poor overall quality of life. What is so unfortunate is that many of these symptoms are treatable.”
Pediatric, adolescent concerns
The treatment of pediatric, adolescent and young adult patients presents unique challenges for psychosocial oncologists.
Certain cancer subtypes — such as leukemia or lymphoma — are associated with high cure rates, but concerns remain about long-term treatment effects and psychological health.
Others, such as certain brain tumors or sarcomas, remain associated with high mortality rates, and oncologists may struggle when discussing poor prognoses with children and their families.
Providing psychosocial care to patients with childhood cancers can improve care in all areas, Lori Wiener, PhD, DCSW, LCSW-C, co-director of the behavior health core and head of the psychosocial support and research program in the pediatric oncology branch at NCI’s Center for Cancer Research, told HemOnc Today.
“Seminal studies have shown that children [with cancer] understand what is happening to them, and that they understand the seriousness of their illnesses,” Wiener said. “This changed the field, as before children’s fears often went unattended. For mental health providers such as myself, finding ways to reduce the emotional isolation these children experience was not only a challenge but a welcome opportunity.”
Communicating information to pediatric patients and monitoring for psychological distress can require different strategies than those employed for adults.
“We have to communicate information to pediatric patients in a way that is truthful and developmentally appropriate, and we need to be able to include them in medical decision-making in an age-appropriate way,” Wiener said. “Providing family centered care is essential. The diagnosis of cancer in a child is a life-changing event for everyone in the family and attention to ongoing parental and family needs is required for optimal psychosocial care to be provided.”
Clinicians also should consider the impact of treatment on adolescents and young adults, who can face unique mental health challenges.
A study by Schultz and colleagues, published in Journal of Clinical Oncology, showed that adolescent survivors of childhood cancers exhibited depressive or anxious behavior 1.5 times more frequently than their siblings. Survivors also were 1.7 times more likely to exhibit antisocial behaviors.
Brinkman and colleagues found that emotional, behavioral and social symptoms frequently occurred in adolescent survivors of childhood cancer, and that some of these symptoms related to treatment modalities like cranial radiotherapy and corticosteroids. Further, the presence of these symptoms often correlated with physical late effects of treatment, such as obesity, disease-related pain and sensory impairment.
“Adolescence is a critical period of emotional, behavioral and social development, and cancer need not be present for the development of problems such as depression, social withdrawal or inattention,” Donovan said. “Appropriate follow-up ought to include systematic screenings for problems that include input from survivors and parents, and the development and delivery of interventions designed to ameliorate these problems.”
The timely delivery of services contributes to the psychological outcome of adolescents, Wiener said.
“These are times when developmental and health trajectories can be derailed by significant challenges to physical, psychological and social well-being,” Wiener said. “We have to offer children, adolescents and young adults developmentally appropriate care and education about their disease in a timely fashion.”
A childhood cancer diagnosis affects more than just the child, as well.
“When you’re working with a child, you are looking at the impact on the entire family all along,” Wiener said. “We are working with the mother and father, the siblings, and often extended family members. They are all greatly impacted at the time of diagnosis, throughout treatment, and often well beyond the end of treatment.”
A study by Sundler and colleagues, published in Journal of Pediatric Oncology Nursing, showed that families with children who survived childhood cancer reported feeling vulnerability even years after the completion of treatment.
“It is vitally important to understand how each family copes and adapts,” Wiener said. “Being able to tailor this information to the individual child and family is critical in order to help them face the long road of treatment, procedures and often recovery.”
Severe mental illness
Like children and adolescents, patients with pre-existing mental illness can present unique challenges to psycho-oncologists.
Although considerable research has focused on depression and anxiety following a cancer diagnosis, few studies have addressed the psychological impact of cancer on patients with a history of mental illness — particularly severe mental illnesses, such as schizophrenia and bipolar disorder.
Although approximately 10% of patients with cancer also have a severe mental illness, many oncologists may be ill-equipped to recognize severe mental illness in their patients, Kelly E. Irwin, MD, instructor of psychiatry at Harvard Medical School and faculty psychiatrist at Massachusetts General Hospital and the MGH Schizophrenia Program, told HemOnc Today.
“It is important to think about severe mental illness as a comorbidity, just like any other comorbidity,” Irwin said. “If an oncologist has a patient with a severe cardiac comorbidity, he or she would seek a cardiology consultation prior to the start of chemotherapy to inform the management of care. Similarly, it is important at the time of a cancer diagnosis to think about how we can optimize the psychosocial functioning of a patient with a severe mental illness.”
Disparities of care may exist for patients with a severe mental illness.
In a study published in Cancer, Irwin and colleagues found that patients with schizophrenia and cancer more often presented at advanced stages, possibly due to barriers to appropriate preventive care or cancer screening.
Further, patients with cancer and schizophrenia were less likely to receive chemotherapy or radiation therapy, and they were more likely to experience complications after treatment.
Potential barriers to diagnosis and treatment among individuals with severe mental illnesses include high poverty and homelessness rates, paranoia, and the lack of a familial or social support system.
“It often goes unrecognized, but people with severe mental illnesses die at ages nearly 25 years younger than the general population, and they are two to four times more likely to die of many common cancers,” Irwin said. “This inequity is underappreciated, and it is important to raise awareness of these factors.”
Because cancer care and mental health generally are practiced in different medical spheres, it can be difficult for oncologists and mental health professionals to coordinate appropriate treatment plans, Pirl said.
“A patient with a severe mental illness may already have a mental health provider who could be helpful in the treatment process,” Pirl said. “Oncology teams want their patients to successfully complete their cancer treatment, and mental health involvement can facilitate this in patients with psychiatric conditions.”
A team-based approach is essential to make sure patients receive appropriate medications.
“Often we are using a combination of psychopharmacological medications, so some sort of medical consultation with a psychiatrist is needed, in addition to having a patient work with a psychologist or licensed clinical social worker to provide evidence-based psychotherapy or cognitive behavioral therapy,” Greer said. “The combination tends to be more effective than just one or the other alone.”
Because cancer treatment can involve medications with the potential to prompt depressive episodes, it is important for oncologists to be fully aware of their patients’ mental health history and treatment.
“If a person with a history of recurrent major depression is on a treatment protocol that recommends interferon — which is indicated for the treatment of melanoma and other cancers — they should be aware that interferon has a really high risk for prompting a recurrence of depression,” Schuermeyer said. “These patients need to be monitored closely.”
Patient navigation can alleviate this problem and build a bridge to better, more inclusive care.
“People with mental illnesses need help and support for matters like coming to appointments or navigating a complex medical system,” Irwin said. “Oncologists should look to the providers in the mental health community who know their patients well and where extra places of support exist. It is important for oncologists to ask patients at the time of diagnosis if they are receiving mental health treatment and, if so, the name of the provider.”
Irwin conducted a pilot study, which was unpublished at the time of reporting, that addressed proactive psychiatric consultations for patients with a history of severe mental illness to determine the utility of connecting patients with consultant case managers or psychiatrists and the time of their cancer diagnoses.
The goal of the study was to create a pragmatic intervention program that could greatly aid treatment in this patient population, as many patients with severe mental illness are unmarried and may lack an appropriate caregiver.
“One-tenth of our population were homeless during the study,” Irwin said. “Many live in group homes. There were patients with very active psychiatric symptoms on study, and these were among the sickest patients I’ve ever worked with.”
Despite these barriers, 93% of recruited patients completed the pilot study.
“We were able to engage them; bring them into the hospital; get their consent; and provide them the surgery, chemotherapy or radiation treatment that they needed,” Irwin said. “Hopefully a life was saved because we were able to unpack their refusals and really understand their cognitive deficits. When we give people with mental illness a couple of chances and really engage them, we are able to move them toward treatment in a person-centered framework that helps them feel respected.”
Integration of counseling and palliative care
Addressing psychosocial consequences of cancer is especially important among patients at the end of life.
Although appropriate supportive and palliative care has been shown to improve end-of-life treatment for patients with cancer, little research has focused on the integration of palliation into patients with depression, anxiety and other mental health conditions.
Similarly, many oncologists may be unsure of the appropriate integration of counseling services for patients with advanced, metastatic and incurable cancer.
The early use of psychiatric services in end-of-life treatment could vastly improve outcomes for patients with cancer and depression, Donald L. Rosenstein, MD, wrote in an article published in Dialogues in Clinical Neuroscience.
“Depressive symptoms complicate end-of-life cancer care by contributing to physical and psychological morbidity,” Rosenstein wrote. “Unfortunately, this treatable cause of suffering is frequently misdiagnosed and poorly treated in patients with cancer who are dying. ... Comprehensive and patient-centered interventions offer patients the incalculable benefits of less suffering and optimum communication with family, friends and clinicians providing care for them at the end of life.”
Psychosocial care fulfills the goal of palliative care and should always be addressed in this realm, Donovan said.
“Palliative care is dedicated to preventing and relieving suffering through the assessment and treatment of physical, psychosocial and spiritual symptoms,” she said. “If psychotherapy or counseling to assist patients in coping with their disease and treatment can prevent and relieve suffering, why would we not integrate them?”
Mental health counseling can improve coping skills in this patient population, according to Greer, who primarily works with patients with advanced cancer.
“Enhancing a patient’s coping is equally as important as treating pain or fatigue,” Greer said. “It is also important that we address coping in the family caregivers of these patients. We are noticing that palliative care interventions help patients and families improve their coping skills, and that change in coping seems in part to account for the improvements in patients' quality of life. It is absolutely essential that we work very closely with palliative care teams to bring these services to patients and family members.”
Palliative care can be beneficial for children and adolescents with cancer, Wiener said.
“The goal of palliative care is to improve the quality of life of a person living with a serious illness,” she said. “Discussing an uncertain prognosis, providing specific information, and discussing the possibility of death can all influence long-term quality-of-life outcomes. Palliative care addresses the psychosocial and spiritual needs of the child and family, including distressing symptoms and elicits goals of care, so that decisions made reflect what is most important to them.”
Many of the disparities that severely mentally ill patients face during active treatment are relevant to palliative care, Irwin said.
“Patients with mental illness have less access to palliative care consultations, and the most marginalized patients — such as those living in a group home environment — might not have anywhere to go at the end of life,” Irwin said. “It is possible to have end-of-life conversations with severely mentally ill patients, but it often helps to engage another person who knows the patient well, someone they trust. The best palliative care is to understand the patient’s values and preferences.” – by Cameron Kelsall
American Society of Clinical Oncology, QOPI Spring 2014 unpublished results. Available at: am.asco.org/assessing-emotional-distress-patients-cancer. Accessed on Oct. 18, 2016.
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For more information:
Kristine A. Donovan, PhD, MBA, can be reached at firstname.lastname@example.org.
Joseph A. Greer, PhD, can be reached at email@example.com.
Kelly E. Irwin, MD, can be reached at firstname.lastname@example.org.
William F. Pirl, MD, MPH, can be reached at email@example.com.
Isabel Schuermeyer, MD, can be reached at firstname.lastname@example.org.
Lori Wiener, PhD, DCSW, LCSW-C, can be reached at email@example.com.
Disclosure: Donovan, Greer, Irwin, Pirl, Schuermeyer and Wiener report no relevant financial disclosures.
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