This issue of JNCCN reviews the NCCN Clinical Practice Guidelines in Oncology: Distress Management for 2010, updated by the NCCN Distress Management Panel. The NCCN appointed this multidisciplinary panel, which met first in 1997, to address the barriers to psychosocial care and to develop clinical practice guidelines.1 The panel members felt that the major barrier, for both physicians and patients, was the negative meaning and stigma attached to words implying the psychological domain, such as psychiatric, psychological, and psychosocial. The panel considered descriptive words that could encompass the range of fears, worries, and concerns of patients with cancer, and proposed the word distress because it could vary in severity from a normal response to a more significant level, consistent with a psychiatric disorder requiring intervention. The word distress also encompasses the range of fears, anxieties, and sadness that patients with cancer experience.
The panel then developed guidelines for the management of distress, recommending that patients be first screened for distress with a short, initial, rapid screening question, followed by a second phase during which the doctor or nurse asks about specific problems. This process should be repeated as clinically indicated as part of routine care. Learning from the success of pain management, the panel suggested using a 0 to 10 scale in the form of a Distress Thermometer (DT) to allow patients to indicate their level of distress, either verbally or with pen and paper. Those who scored above a cutoff score for “caseness” (≥ 4) were asked to identify the domains causing the distress and then were referred to a professional such as a social worker, nurse, psychologist, chaplain, or psychiatrist, depending on the problem.2 These guidelines are updated annually. In Canada, an effort is being made to establish distress the sixth vital sign.3
In 2007, the Institute of Medicine (IOM) issued a landmark report noting that quality cancer care must integrate the psychosocial domain, because strong evidence shows the efficacy of a range of interventions, from psychological to psychopharmacologic.4 The model for integrating psychosocial services is based strongly on the NCCN Distress Management Guidelines. There is now an alliance of more than 30 professional and advocacy groups with the mission to assure implementation of these guidelines.
This issue of JNCCN contains important steps that have been taken to encourage the integration of psychosocial services in cancer care. As discussed, short screening instruments, particularly the DT, have been validated as a broad first screen.5 Touch-screen technology brings a rapid waiting room opportunity to screen for psychosocial problems.6 Jacobsen has developed a patient chart audit of quality care that is being used in the voluntary audit of community oncology practices.7
However, attitudinal barriers persist that reduce the implementation of quality psychosocial care. We propose that stigma is a major barrier that delays patients' asking for help and oncologists' integrating psychosocial care into their practice. Stigma has been associated with cancer for centuries. In the mid 1970s, health care professionals began to tell people their cancer diagnosis and cancer “came out of the closet” and into the public media. Today, it is hard to recall when the word cancer was not spoken. Nonetheless, stigma remains, and is attached more strongly today to some cancer sites than others, particularly where “blaming the victim” occurs, as with lung cancer.
Regrettably, the stigma attached to psychological issues has not appreciably diminished, even when the issue relates to a life-threatening illness such as cancer. This partially accounts for why the psychosocial domain has been slow to develop. A large proportion of patients in need of psychosocial interventions do not receive them,8 even though clinical depression has a marked effect on quality of life and adherence to cancer treatments if left untreated.9 Only a few services implement recommended screening procedures10 and, despite evidence for the benefits of communications skills training, these are not widely implemented.11 Funding for psychosocial services has not yet matched the level of need, despite compelling evidence of cost benefits.3
This editorial briefly reviews this history, which will help those working with patients with cancer to understand how contemporary attitudes have formed and how recalcitrant fixed beliefs can be to change.
The ideas and viewpoints expressed in this commentary are those of the author and do not necessarily represent any policy, position, or program of the NCCN.
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