Cancer Survivors Also Live With Distress

Neil Osterweil

April 26, 2013

To say that a diagnosis of cancer can be stressful for patients is putting it mildly, and the rigors of treatment often add to the burden. Yet more than half of adult cancer survivors report that they have never used or been offered professional counseling, support groups, or other services to help them cope with psychologic distress.

To assess this aspect of cancer care, Laura P. Forsythe, PhD, from the Patient-Centered Outcomes Research Institute in Washington, DC, and colleagues used data on 1777 cancer survivors from the 2010 National Health Interview. The results were published online April 22 in the Journal of Clinical Oncology.

Overall, 55.1% said their provider had never discussed professional counseling or support groups with them, and they had never used such services, and 31.4% said they had discussed it with their provider but did not get help.

Only 4.4% of survivors said they had used psychosocial support services without discussing it with their providers, and only 8.9% reported having a discussion and getting support. Still, 74.9% of respondents said they were "very satisfied with how their emotional and social needs were met."

"Many survivors tell us they don't want or need additional help with their social and emotional concerns after cancer.... But we know that an important group is still missing the care that they need," Dr. Forsythe told Medscape Medical News.

She explained that psychosocial care is a 2-way street, and that the most effective way to ensure that patients who need such care actually receive it might be a combination of provider-directed interventions and patient education about the potential need for, and availability of, supportive mental health services.

These findings identify an area of cancer care where there is considerable room and opportunity for improvement, note William F. Pirl, MD, from the Center for Psychiatric Oncology and Behavioral Sciences at Massachusetts General Hospital Cancer Center in Boston, and colleagues in an accompanying editorial.

"In the next few years, the oncology community will need to address the accessibility of psychosocial care in the United States. There is much to be learned from our colleagues in primary care who have devoted considerable effort to designing and testing innovative models of care that increase access to mental health services," they write.

Services Tied to Accreditation

A major impetus for incorporating psychosocial support into comprehensive cancer care will be a new accreditation requirement from the American College of Surgeons Commission on Cancer, Dr. Pirl told Medscape Medical News. Beginning in 2015, the commission will require that to receive accreditation as a cancer center, institutions must have in place a formal process for screening patients for psychosocial distress and providing services as needed.

The National Comprehensive Cancer Network currently publishes guidelines for distress management, which state that "all patients should be screened for distress at their initial visit, at appropriate intervals, and as clinically indicated, especially with change in disease status (i.e., remission, recurrence, progression)."

In addition, cancer organizations, such as the American Society of Clinical Oncology, are placing increasing emphasis on treating the whole patient, and are developing guidelines for treating fatigue, anxiety, and depression in cancer survivors.

Patients with cancer also need to be informed of the availability of services, and be reassured that distress is a normal reaction to finding oneself in an abnormal situation, Dr. Pirl said.

"Unfortunately, there is still a stigma to getting psychosocial care," and it can be more difficult for people who already have the stigma of cancer to deal with that. "But cancer's really hard to cope with, and you don't need to have a mental disorder to benefit from psychosocial care," he explained.

Although large comprehensive cancer centers often have psychosocial support staff in place or as part of their referral networks, many smaller community oncology practices do not. It can be hard for oncologists in those practices to find community resources for their patients with cancer-related distress. Oncologists should identify mental health resources in their communities and establish referral networks to ensure that their patients who need it get psychosocial care, he said.

Dr. Pirl and colleagues note that depression outcomes in cancer patients are better when a collaborative care model for treatment is used, with primary care providers offering mental health services under the guidance and support of mental health experts.

Such a system is currently in place at the Lee Memorial Health System in Tampa, Florida; providers there can receive telephone consultations from psychiatric oncology providers at Massachusetts General Hospital.

The American Psychosocial Oncology Society, of which Dr. Pirl is currently president, offers a free online curriculum for oncologists, nurses, and other clinicians who want to learn more about providing psychosocial care to cancer patients.

The study was supported by the National Cancer Institute and the Cancer Prevention Fellowship Program. Dr. Forsythe and Dr. Pirl have disclosed no relevant financial relationships.

J Clin Oncol. Published online April 22, 2013. Abstract, Editorial

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