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Oncologists too often fail to detect the severe distress that can accompany a diagnosis and subsequent treatment.
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
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.”
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
But he cited a recent survey of 1000 randomly selected ASCO oncologists—about two-thirds community-based and one-third cancer center-based— that found that only 14% used screening instruments to assess their patients’ well-being. Only 7% of the survey respondents said they were “very familiar” with the NCCN distress management guidelines, while 25% were “somewhat familiar.”
“There is limited adoption of universal screening despite the issuance of practice guidelines and consensus reports,” Jacobsen said, noting the still “frequent reliance on methods that are likely to result in high rates of false-negative screens.”
Researchers in the field stress that for busy oncologists managing a stream of patients each day, simple, standard screening tools are likely the easiest and most effective to incorporate into practice.
“Having a checklist, which includes screening for psychosocial problems, can make it easier for a physician to discuss psychosocial issues with patients,” Naughton said, noting that “oncologists are often not trained to address psychosocial issues, and it is not generally reimbursed. A few extra minutes means money and they don’t have much time.”
Michelle J. Naughton, PhD
A second major challenge, cancer researchers said, is ensuring that patients receive psychosocial care after screening. Goldstein, who is also a clinical professor in the Department of Medicine at the University of New South Wales in Sydney, Australia, cited recent studies suggesting that they often do not, although the benefits of treatment are increasingly well documented.
“The importance of alleviating emotional distress is broader than might be initially suspected. Its presence is associated with increased overall healthcare utilization, reduced quality of life, altered compliance with therapies, and possibly even reduced survival,” Goldstein wrote in a recent paper, “Translating Research into Everyday Patient Care: Applying the Outcomes of Psychosocial Screening and Intervention Trials into Clinical Practice.”
Goldstein pointed, for example, to a recent study that showed that patients with non—small cell lung cancer who received early intervention to relieve pain, physical problems, and mood disorders lived longer than patients receiving usual care.
And yet he cited a recent multi-institution study that showed that only 45% of patients identified with significant depression were referred for mental health services. Another study, of low-income women with breast or gynecologic cancer, found that only 12% with major depression were prescribed antidepressants, and 5% received psychological treatment.
Goldstein described the move from acknowledging the importance of screening and care to adding practical solutions as “still in evolution.” But he was encouraged, he said, by recent studies that showed the effectiveness of several delivery models, including a telephone-based service deployed in urban and rural settings that helped patients manage pain and depression.
Researchers say, however, that some oncologists are reluctant to screen for fear they have no referral options. This poses a particular concern for community oncologists who don’t have the on-site resources that cancer centers do.
Reimbursement is also a challenge.
“People providing mental health services are reimbursed at lower rates than physicians. We’re still getting grants to support psychosocial care that is an integral part of cancer care,” said Holland.
But she noted that a push to identify a broad range of services for patients gained momentum after the Institute of Medicine published its seminal report in 2008, Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs, which determined that “the standard for quality cancer care today must integrate the psychosocial domain into routine care.”
Holland said that models “to assure integration” are being explored through American and international organizations that have endorsed the statement, particularly the International Union Against Cancer, the International Psycho-Oncology Society, and the International Pediatric Society.
Among these groups is the Alliance for Quality Psychosocial Cancer Care, a coalition of more than 30 of the major professional and advocacy organizations that formed in 2008 to implement the report’s recommendations. The Alliance is creating an online database that will be easily searchable for counseling and support resources now available. So far, it includes 750 organizations and services, which range from practical to psychosocial sources of support, said the group’s administrator, Julie Taylor. People can search by state, search by type of support, or filter by cancer diagnosis.
“We’re making this as robust and comprehensive as we can,” Taylor said, adding, “We hope to launch this later this year.”
In another major initiative, the Cancer Support Community (CSC) is creating a screening instrument and referral tool intended for use in community settings, such as small oncology practices, community cancer centers, and community-based nonprofits that provide psychosocial services.
The CSC recently modified and validated an existing screening tool that systematically assesses 36 potential sources of stress and links people to resources available to them. The questions include topics ranging from depression to fatigue, to the availability of transportation and help around the house. Patients receive printed-out information on the spot that addresses the problems they cite.
Having a checklist, which includes screening for psychosocial problems, can make it easier for a physician to discuss psychosocial issues with patients. ”
—Michelle J. Naughton, PhD
“This is an important tool because 85% of cancer patients are treated in the community, not at comprehensive cancer centers,” said Joanne Buzaglo, PhD, senior director of research for the CSC’s Cancer Survivorship Research and Training Institute. “Often doctors don’t ask the questions if they don’t have resources to send their patients to, and people need to be able to access support in the community in which they live.”
An ongoing demonstration project, conducted at 4 community-based sites around the country, is now testing the screening instrument’s feasibility in the community, Buzaglo said, adding, “The next step will be to roll this out across the CSC network of over 50 sites and across healthcare systems throughout the country.”
Screening and widely available treatment are increasingly important, Naughton said, as the number of cancer survivors—many living with acute to chronic illnesses or conditions, as well as lingering health concerns resulting from their illness or its treatment—surges. There are now 12 million survivors of various diseases in the United States, she said, and between 10% and 25% may demonstrate significant symptoms of depression, as well as a higher risk of suicide than the general population.
“Among long-term survivors there is a heightened proportion of generalized anxiety disease, different types of phobias, panic disorders, and post-traumatic stress,” she said, noting that these patients also experience fatigue, concerns about employability, sexual dysfunction, numbness, and side effects from treatments and medications that may change over time.
“Previously, the major clinical focus was on treating the disease,” she added. “We’ve made remarkable progress and people are living much longer. It has turned many types of cancer into chronic conditions. It’s happened over a short time frame in human history. Beyond the initial treatment for cancer, many people have long-term side effects, and given that the majority of cancer patients are over age 65, this creates the need for special consideration and services.”
While studies continue to show gaps in screening and follow-up, there is growing acceptance, however, that psychosocial care is an integral part of treatment, Jacobsen said.
The battle with skeptics, “has been largely won,” he said. “We generally don’t meet with a lot of resistance from providers once we point out that the quality of psychosocial care they provide their patients could be improved. More often than not, what we hear from them is the question, ‘What can I do?’
Increasingly, he said, screening and follow-up are being institutionalized into practice.
“We are likely to see implementation rise as providers begin to monitor the quality of psychosocial care they provide their patients. Some are now doing it voluntarily through ASCO’s Quality Oncology Practice Initiative,” Jacobsen said, noting that the American College of Surgeons’ Commission on Cancer has drafted guidelines that would require cancer committees at each hospital to make sure there is a process in place to screen patients and refer them if necessary.
“In 10 years, screening and psychosocial care will hopefully be accepted as a given,” he said. “In the move toward targeted oral cancer therapies, adherence will be a major issue, and distress is often one of the principal causes of nonadherence. And so psychosocial care will become increasingly important.”
Tracey Regan is a freelance healthcare journalist.