Forty years ago, a diagnosis of cancer was considered so devastating that oncologists sometimes withheld the news from patients. But potent interventions, from early screening to a burgeoning stream of new drugs, have so dramatically altered survival prospects that many patients now spend years managing what have become chronic conditions.
How successfully they cope in this complex new environment may depend on their psychological well-being, however, according to a growing body of research linking psychosocial status not just to quality of life, but to health outcomes as well. But studies also show that oncologists too often fail to detect the severe distress that can accompany a diagnosis and subsequent treatment.
“People with poor psychosocial status tend to be poorer adherers to medical treatments and follow-up,” said Michelle J. Naughton, PhD, a professor of social sciences and health policy at Wake Forest University in Winston-Salem, North Carolina, who has studied the impact of breast cancer and its treatment on long-term survivors. Distressed patients, she notes, are less likely to make lifestyle changes in exercise, diet, nutrition, and smoking.
The reason physicians fail to detect problems and refer patients for help is that they too often don’t ask, said Paul B. Jacobsen, PhD, chairman of the Department of Health Outcomes and Behavior at the H. Lee Moffitt Cancer Center and Research Institute in Tampa, Florida. Many doctors are also unaware, he added, that efficient, easily deployed screening tools are available.
“In 2011, there is a growing consensus on the optimal psychosocial care of people with cancer, as well as considerable evidence that many patients still do not receive this form of care,” he said. “Brief counseling can be effective. Medication and ongoing counseling for people who are more severely depressed is effective. There is considerable evidence that psychosocial care improves quality of life for cancer patients. The challenge is translating the research into practice.”
Paul B. Jacobsen, PhD
The Importance of Screening
Naughton and Jacobsen, who have written widely on the psychosocial impact of cancer, screening, and treatment, presented some of the latest research on the topic at an education session at the ASCO meeting in June. A third speaker, David Goldstein, MBBS, MRCP(UK), senior staff specialist in medical oncology at Prince of Wales Hospital in Sydney, Australia, discussed research linking psychosocial care to outcomes and detailing effective models for screening, follow-up, and treatment.
A pressing challenge for the profession, Jacobsen said, is to “build a market and demand” for screening among providers, and to encourage them to adopt existing guidelines and recommendations for psychosocial care.
He pointed to a recent study evaluating the quality of psychosocial care at 11 practice sites in Florida that found the centers assessed well-being just 46% of the time, on average. It also showed wide disparities in care: 1 of the centers checked just 12% of the time, while another assessed 86% of the time. In contrast, the same institutions evaluated pain levels 85% of the time, on average.
“This is where we need to be in terms of assessing emotional well-being,” said Jacobsen, a co-author of the study “Evaluating the Quality of Psychosocial Care in Outpatient Medical Oncology Settings Using Performance Indicators,” which was published last year in the journal Psycho-Oncology
The means to do so are readily available, he added. The National Comprehensive Cancer Network, for example, adopted screening practice guidelines more than a decade ago, including an evaluation tool called the “Distress Thermometer,” which enables patients to describe their symptoms on a scale of 0 to 10.
Jimmie C. Holland, MD, the Wayne E. Chapman Chair in psychiatric oncology at Memorial Sloan-Kettering Cancer Center in New York City and a pioneer in the field, said she and her colleagues began developing this screening tool after determining that cancer patients’ self-reports were critically important. It was modeled on the pain thermometer, she said, which they viewed as a simple and accurate method of evaluation that did not rely on physicians to make their own subjective observations.
“There are many ways to assess emotional well-being,” said Jacobsen. “The Distress Thermometer has been found to be a useful initial screening measure. For patients found to be in distress on this measure, a more in-depth assessment can then be used to pinpoint the source or sources of distress.”