Guidelines Needed for Distress in Cancer Patients

May 1, 1997

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.

NEW YORK--The development of guidelines for the management of psychologicaldistress in cancer patients has lagged far behind that of treatment guidelinesfor specific cancers, said Jimmie Holland, MD, chair, Department of Psychiatryand Behavioral Sciences, Memorial Sloan-Kettering Cancer Center.

The effort to get such guidelines written can be compared to the effortsthat led to cancer pain guidelines: The first step is simply to get theproblem 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, tomeasure distress," she said.

Dr. Holland, in her presentation at the National Comprehensive CancerNetwork'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 openlywhen asked about distress," she said. This point is important, sincethe reluctance of both patients and physicians to initiate discussionsabout distress has been a major barrier to treatment.

Most distress in patients with a life-threatening disease such as canceris a mixture of anxiety and depression, Dr. Holland said. The distressmay stem from the normal fears, worries, and sadness that are likely tooccur in every person in this situation.

When distress increases beyond the normal, Dr. Holland refers to itas "subsyndromal" distress, ie, distress that does not quitereach a diagnostic category, such as reactive anxiety (adjustment disorder).These subsyndromal patients may have periods of anxiety where they feelas if they can't get their breath, become very tense and anxious, and can'tsleep, she said.

Finally, at the far end of the distress spectrum are those patientswith a definable anxiety disorder.

The same spectrum applies to sadness, ranging from normal sadness, toa sense of hopelessness and pessimism ("I'll never make it"),all the way to a major depression ("There really is no way out ofthis. I might as well kill myself now").

Just as there are a range of problems in patients with cancer, thereare a range of resources available. Family, friends, community, and religiousgroups all provide support for the patient with normal distress relatedto a cancer diagnosis. For people with somewhat more significant symptoms,the physician is there to talk about the problem, as is the nurse and socialworker, she said.

For those with reactive symptoms that begin to interfere with dailyfunction, and possibly with the patient's cancer treatment, a psychiatricevaluation is needed. The mental health professional can be a nurse orsocial worker with special training, a psychologist, or a psychiatristfor the patient who has a major depression that requires evaluation ofsuicidal risk and perhaps drug intervention.

Providing help for people across the entire spectrum are the self-helpand patient advocacy groups, "organizations that have grown up inthe last 20 years that supply a helpful hand in the triage of patientsto the right resources," Dr. Holland said.

Rapid Psychological Screening

Dr. Holland's group has developed a rapid screening test to evaluatedistress in cancer patients that can be used in the clinic, "becausemost oncologic care is not in the hospital any more, it's in the clinics,"she said.

Using the thermometer scale , patientsrate their distress at each clinic visit as 0 (none) to 5 (moderate) to10 (extreme). "We found that patients who mark above 6 on this scalehave symptoms equivalent to a rating of 15 on the Hospital Anxiety DepressionScale, which indicates a need for intervention."

At Memorial Sloan-Kettering, Drs. Andrew Roth and Alice Kornbluth havetested the thermometer scale in the prostate cancer and advanced GI clinics."There was good compliance; people didn't mind doing it," shesaid, 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 becausemen 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'tfit a psychiatric diagnosis yet, and it's not easily measurable, but itrepresents distress."

Practice guidelines are needed to assure that the diagnosis and treatmentof 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 distressis quite haphazard. There's no systematic way of getting patients to theright resource," she said. "We need an integrated institutionalapproach that conserves resources. For example, we don't need to referpatients to the Psychiatry Service who really only need to see a clergymanabout their spiritual concerns."

At Memorial Sloan-Kettering, psychiatric treatment guidelines are beingdeveloped. The initial referral for psychiatric evaluation would be throughself-referral, family or staff, history of mental problems or of takingpsychotropic drugs, or a clinic or hospital screening test.

She estimates that about 35% of patients who are referred will havethe mildest diagnosis (reactive anxiety and depression); about 25% willhave major depression; 15% confusional state (delirium secondary to medicationsor 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 foreach one of those disorders," she said, and the guidelines will beincorporated into the overall disease management pathways for all the cancerstreated at Sloan-Kettering.

Dr. Holland stressed the need for a national plan to boost the recognitionand treatment of psychological distress in cancer patients. The plan wouldinclude a consortium of multidisciplinary experts from major professionaladvocacy organizations, who would develop a physician's statement for endorsementby all the relevant organizations, as well as institutional standards,and a brief distress assessment tool.

The effort would include public and professional awareness campaignsabout the need to improve psychological care. Said Dr. Holland: "Ifpatients are educated, they begin to say, Look, Doc, it's part of yourjob to handle the fact that I'm so depressed I can't get out of bed inthe morning, along with my cancer."

Equally important, she said, is to teach doctors that asking about distressis just as critical as asking about pain and fatigue, but there remainsgreater stigma to asking about distress.

Finally, she said, an agenda needs to be developed to present to theNCI, survivor groups, and research foundations, to ensure that cost ofcare and quality of life outcome measures are included in research studies.