Psychosocial oncology is the sub-specialty in oncology that studies the psychosocial impact of cancer on patients at all stages of disease and their families. It also examines the role of behavioral and psychosocial factors in cancer risk, prevention and detection.
Why Psychosocial Oncology? A Brief History
Cancer is a disease that has long carried fears beyond that of all other diseases likely because for centuries there was no known cause or treatment. The word was not spoken, and patients were not told their diagnosis because “they would give up hope.” This began to change in the 1970s when a few patients were cured of cancer and new chemotherapy drugs were added to surgery and radiation for treatment. As the fear lessened, doctors started telling patients their diagnosis and discussing treatment options with them. We could, at last, study their reactions to illness. Cancer “came out of the closet.”
The early research was aimed at developing scales to measure subjective symptoms of patients with cancer, like anxiety, depression, pain and fatigue. It was assumed they could not be reliably measured, but the field now has a range of validated scales to measure these feelings. This was a necessary step to be able to test our psychotherapies and drugs to help patients cope better with cancer. We now have “evidence-based” interventions, meaning they are derived from clinical research studies.
Steps in Health Policy
National Comprehensive Center Network (NCCN)
In 1997, the National Comprehensive Center Network (NCCN), the first organization writing clinical practice guidelines, convened a panel to explore “why it is so hard to include the psychosocial in clinical care.” The panel members came from 18 centers and represented all disciplines in psychosocial care. The conclusion was that words like “mental”, “psychiatric” and “psychological” were not liked by patients or oncologists because they were stigmatized. We realized that emotional problems were as stigmatized as cancer. We chose the word “distress” to represent normal feelings in a non-threatening way. We decided, like the pain doctors, to ask, “How is your distress level on a 0-10 scale?” We drew a thermometer and called it the “Distress Thermometer.” Patients accept this, and it is translated into over 15 languages and is recommended for use in the NCCN guidelines.
Institute of Medicine and Commission on Cancer
In 2008, $1 million was given to the Institute of Medicine (IOM), the health policy organization in Washington, to explore why psychosocial care was so poor in cancer. A panel explored the issues for a year and reported that to give quality care today, psychosocial care had to be integrated into routine cancer care. In 2012, the American College of Surgeons, which accredits cancer centers, agreed and declared that after 2015, all cancer centers had to have an onsite psychosocial program to identify distressed patients and triage them to appropriate care.