Significant distress frequently accompanies the diagnosis and treatment of cancer but is often overlooked and is rarely screened for, according to Jimmie C. Holland, MD, of Memorial Sloan-Kettering Cancer Center, New York. Holland discussed recommendations from the Distress Management Panel of the National Comprehensive Cancer Network (NCCN) at the group’s 18th Annual Conference, held in Hollywood, Florida.1
“Along with all the advances in the science of care, we surely have lagged way behind with the issue of distress in cancer,” said Holland, who is the Wayne E. Chapman Chair in Psychiatric Oncology at Memorial Sloan-Kettering and chair of the Distress Management Panel of the NCCN. Approximately one-third of cancer patients report significant distress, she noted.
In recent years, however, psycho-oncology, the term applied to the psychosocial concerns of cancer patients, has become a multidisciplinary subspecialty within oncology. It pertains to the emotional responses of patients at all stages of disease, as well as those of their families and their healthcare providers.
A diagnosis of cancer was once a carefully guarded secret, and therefore little to no attention was paid to the corresponding emotions, Holland noted. This changed in the 1970s, when some cancers became curable and negative attitudinal barriers were replaced with a growing optimism. “Around 1975, patients began to be told their diagnosis and treatment options. Their psychological responses could finally be explored,” she said.
Although the area of psycho-oncology was born at this time, it remained a subjective concept based largely on the physician’s observation; patient’s self- reports were not trusted. Eventually, as a means of measuring subjective symptoms, validated tools and scales were developed to assess health-related quality of life, pain, fatigue, anxiety, depression, and delirium. In clinical trials, these tools began to produce data showing that effective interventions could affect symptoms.
Guidelines From the NCCN
In 1997, the NCCN settled on the term “distress” as a way to describe the continuum ranging from normal fears, worries, and sadness to severe distress, including depression, anxiety, family crises, and spiritual needs. The development of the NCCN Clinical Practice Guidelines in Oncology for Distress Management2 reflects the growing importance of this area of oncology, Holland said.
These NCCN guidelines recommend that distress be recognized, monitored, documented, and treated promptly during the initial patient visit and as clinically appropriate. Screening should identify the level and nature of the distress, and symptoms of distress should be managed according to these guidelines, she said.
The guidelines encompass screening tools for measuring distress, including a 0–10 screening scale and a problem list that queries patients on a variety of issues. Patients can complete this form while in the waiting room, and those with scores indicating moderate or severe distress can be evaluated further during the office visit by a nurse or a physician.
“This approach has been validated in 15 different countries in different languages. It is a brief broad brushstroke that is a good start,” Holland noted.
Patients with clinical evidence of mild distress or a score of <4 on the screening tool should be provided with relevant resources, while those with clinical evidence of moderate-to-severe distress should be assessed by their primary oncology team, including an oncologist, a nurse, and a social worker, the guidelines state. The healthcare provider should seek to identify high-risk patients, as indicated by periods of vulnerability and risk factors for distress. These risk factors include practical problems (such as transportation, child care, insurance), family problems, spiritual/religious concerns, social problems, and physical problems.
Unrelieved physical symptoms can be treated according to disease-specific or supportive care guidelines. Where indicated, referrals can be made to mental health services, social work and counseling services, or pastoral services.
Beyond the NCCN: Support for Psycho-oncology
The integration of psycho-oncology into cancer care has been endorsed by numerous other organizations, including the Institute of Medicine, which in 2007 issued the landmark white paper Cancer Care for the Whole Patient that included a model for the delivery of psychosocial services. The American College of Surgeons Commission on Cancer is developing a new standard of accreditation for 1500 cancer centers, requiring that the psychosocial domain be a component of routine care by 2015.
In addition, the American Psychosocial Oncology Society, the Association of Oncology Social Work, and the Oncology Nursing Society are developing guidelines for helping cancer centers implement new requirements for psychosocial care. Furthermore, the International Psycho-oncology Society (IPOS) established an international quality standard to integrate the psychosocial domain into routine care, and that standard has now been endorsed by 57 organizations. IPOS has proposed that distress should be monitored routinely as the “sixth vital sign,” after pain.
In closing, Holland commented, “We have developed a science of care, which was essential to get ourselves a place at the table with the oncologist and to become a subspecialty.” Along with science, she suggested that empathy—the humanistic dimension—remains critical.
1. Holland JC. Distress screening and the integration of psychosocial care into routine oncologic care. Presented at: 18th Annual Conference of the National Comprehensive Cancer Network; March 13-17, 2013; Hollywood, FL.
2. National Comprehensive Cancer Network. NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®). Distress Management. Version 2.2013.