NEW YORK--The development of guidelines for the management of psychological distress in cancer patients has lagged far behind that of treatment guidelines for specific cancers, said Jimmie Holland, MD, chair, Department of Psychiatry and Behavioral Sciences, Memorial Sloan-Kettering Cancer Center.
The effort to get such guidelines written can be compared to the efforts that led to cancer pain guidelines: The first step is simply to get the problem recognized and diagnosed so that patients can be referred for counseling. "I propose a scale of 0 to 10, as is used for evaluating pain, to measure distress," she said.
Dr. Holland, in her presentation at the National Comprehensive Cancer Network's second annual meeting, said that she prefers to use the term "distress," to describe cancer patients' psychological problems, thus avoiding labeling such problems as psychiatric or emotional.
"Patients feel less stigmatized and are more likely to talk openly when asked about distress," she said. This point is important, since the reluctance of both patients and physicians to initiate discussions about distress has been a major barrier to treatment.
Most distress in patients with a life-threatening disease such as cancer is a mixture of anxiety and depression, Dr. Holland said. The distress may stem from the normal fears, worries, and sadness that are likely to occur in every person in this situation.
When distress increases beyond the normal, Dr. Holland refers to it as "subsyndromal" distress, ie, distress that does not quite reach a diagnostic category, such as reactive anxiety (adjustment disorder). These subsyndromal patients may have periods of anxiety where they feel as if they can't get their breath, become very tense and anxious, and can't sleep, she said.
Finally, at the far end of the distress spectrum are those patients with a definable anxiety disorder.
The same spectrum applies to sadness, ranging from normal sadness, to a sense of hopelessness and pessimism ("I'll never make it"), all the way to a major depression ("There really is no way out of this. I might as well kill myself now").
Just as there are a range of problems in patients with cancer, there are a range of resources available. Family, friends, community, and religious groups all provide support for the patient with normal distress related to a cancer diagnosis. For people with somewhat more significant symptoms, the physician is there to talk about the problem, as is the nurse and social worker, she said.
For those with reactive symptoms that begin to interfere with daily function, and possibly with the patient's cancer treatment, a psychiatric evaluation is needed. The mental health professional can be a nurse or social worker with special training, a psychologist, or a psychiatrist for the patient who has a major depression that requires evaluation of suicidal risk and perhaps drug intervention.
Providing help for people across the entire spectrum are the self-help and patient advocacy groups, "organizations that have grown up in the last 20 years that supply a helpful hand in the triage of patients to the right resources," Dr. Holland said.
Rapid Psychological Screening
Dr. Holland's group has developed a rapid screening test to evaluate distress in cancer patients that can be used in the clinic, "because most oncologic care is not in the hospital any more, it's in the clinics," she said.
Using the thermometer scale , patients rate their distress at each clinic visit as 0 (none) to 5 (moderate) to 10 (extreme). "We found that patients who mark above 6 on this scale have symptoms equivalent to a rating of 15 on the Hospital Anxiety Depression Scale, which indicates a need for intervention."
At Memorial Sloan-Kettering, Drs. Andrew Roth and Alice Kornbluth have tested the thermometer scale in the prostate cancer and advanced GI clinics. "There was good compliance; people didn't mind doing it," she said, adding that the test takes less than five minutes to complete.
Patients who scored above 6 were referred for a mental health evaluation. The prostate clinic had the fewest referrals, she said, probably because men are very reluctant to say they have distress.
Overall, about 20% of patients scored high enough to need referral. "With a cutoff of 6, we are picking up significant distress," Dr. Holland said, "but it looks as if it's subsyndromal. It doesn't fit a psychiatric diagnosis yet, and it's not easily measurable, but it represents distress."
Practice guidelines are needed to assure that the diagnosis and treatment of psychological distress becomes a part of the medical management of cancer, Dr. Holland said.
"I think right now that the triage of cancer patients with distress is quite haphazard. There's no systematic way of getting patients to the right resource," she said. "We need an integrated institutional approach that conserves resources. For example, we don't need to refer patients to the Psychiatry Service who really only need to see a clergyman about their spiritual concerns."
At Memorial Sloan-Kettering, psychiatric treatment guidelines are being developed. The initial referral for psychiatric evaluation would be through self-referral, family or staff, history of mental problems or of taking psychotropic drugs, or a clinic or hospital screening test.
She estimates that about 35% of patients who are referred will have the mildest diagnosis (reactive anxiety and depression); about 25% will have major depression; 15% confusional state (delirium secondary to medications or their disease); 10% anxiety disorders; 5% dementias; 5% psychotic disorders; and 5% substance abuse.
"The guidelines are being written so that we have a pathway for each one of those disorders," she said, and the guidelines will be incorporated into the overall disease management pathways for all the cancers treated at Sloan-Kettering.
Dr. Holland stressed the need for a national plan to boost the recognition and treatment of psychological distress in cancer patients. The plan would include a consortium of multidisciplinary experts from major professional advocacy organizations, who would develop a physician's statement for endorsement by all the relevant organizations, as well as institutional standards, and a brief distress assessment tool.
The effort would include public and professional awareness campaigns about the need to improve psychological care. Said Dr. Holland: "If patients are educated, they begin to say, Look, Doc, it's part of your job to handle the fact that I'm so depressed I can't get out of bed in the morning, along with my cancer."
Equally important, she said, is to teach doctors that asking about distress is just as critical as asking about pain and fatigue, but there remains greater stigma to asking about distress.
Finally, she said, an agenda needs to be developed to present to the NCI, survivor groups, and research foundations, to ensure that cost of care and quality of life outcome measures are included in research studies.