Recognizing & managing distress can lead to better outcomes.
By her own admission, Cindy Walsten became fairly obsessed with her condition after she received a diagnosis of ovarian cancer in the fall of 2012. She caught herself staring at a computer screen for hours, compiling a mental database from every scrap of information she could find. Some days, she convinced herself everything was going to be fine. At other times, some invisible dam inside her would break, and she feared she might drown in her own sorrow.
Cancer changes people. Before doctors discovered a malignant growth on her ovary, Walsten was happily enjoying an early retirement at age 55 from civilian service at the Joint Munitions Command in Rock Island, Ill., making travel plans and relishing the extra time with her grandson. Then she noticed some spotting. She told herself it was probably normal. Her doctor told her otherwise: Bleeding after menopause is not normal.
In the hospital following surgery to remove the tumor, a nurse asked Walsten about her mental and emotional state. The medical staff was concerned enough to prescribe antidepressants and suggest ways to relax and meditate. Ultimately, Walsten conquered her anxiety through the constant, calming presence of her grown daughters and sisters, and regular visits to a Gilda's Club (now Cancer Support Community) support group. "I wanted to hear from someone else who experienced the same thing, and who is alive," she says. "In your head, it's a death sentence. But then you think, 'If they can do it, I can do it.'"
Today, as Walsten approaches the end of her chemotherapy treatment, she says, "I've talked myself out of the deep darkness I was in."
Most of the time, negative emotional responses to cancer, such as vulnerability and sadness, are normal, manageable and temporary. But for more than one-third of patients, cancer instills an avalanche of fear, anger and anxiety that takes over and doesn't go away, intensifying the experience. Experts call this response "distress," and it is an increasing focus of comprehensive cancer care.
Many doctors have come to accept that treating distress will not only improve the quality of life for people living with cancer but will also enhance treatment adherence, hasten recovery times and even lower healthcare costs. In fact, so much support has coalesced around the value of recognizing distress that, starting in 2015, more than 1,500 cancer centers in the nation will need to screen patients for distress to maintain their accreditation with the American College of Surgeons Commission on Cancer.
"Treatment has always been biomedically based. What’s the tumor? What’s the staging? What are the genetic markers?" says James Zabora, who serves as director of the Life with Cancer education and support program based in Fairfax, Va. "Ultimately, we have to say, who is this person we are talking to and how can we enable them to handle this disease?" In short, treating distress means healing the mind as much as the body.
We know from numerous research studies that if we do not offer these patients appropriate treatment, they will suffer psychologically from their illness.
The National Comprehensive Cancer Network (NCCN) describes distress as "an unpleasant emotional experience of a psychological, social and/or spiritual nature that extends on a continuum from normal feelings of vulnerability, sadness and fears to problems that become disabling, such as depression, anxiety, panic, social isolation and existential and spiritual crises."
Yet it's a spectrum—there’s no distinct borderline that separates normal worry from distress, says Barbara Andersen, a psychology professor at The Ohio State University in Columbus, Ohio. Generally speaking, people with distress have trouble carrying on with everyday life. "The issue is when the level of distress gets so high it causes other impairments in your life," she says, such as trouble sleeping, loss of appetite, lack of interest and irritability.
Zabora began to focus on distress almost three decades ago. When he started talking to patients about how they were feeling, he says, "a gentleman came up to me and said, 'I want to thank you. You were the only one to ask me about me.' I think most people who are distressed know they are distressed."
"We know from numerous research studies that if we do not offer these patients appropriate treatment, they will suffer psychologically from their illness," he adds.
It's not unusual to experience distress after a cancer diagnosis, but distress becomes a prevailing life force for some patients more than others. The vulnerability to distress is as individual as each patient and each cancer type. In a 2001 study in the journal Psycho-Oncology, Zabora and his colleagues from The Johns Hopkins University School of Medicine in Baltimore reported that among a sample of about 4,500 patients, the overall presence of distress was about 35 percent. But among those with lung cancer, approximately 43 percent experienced distress. And a study published in 2012 in the same journal suggested that among various types of cancer, men with prostate cancer appeared to be the least likely to suffer from distress. Demographics can make a difference, too. One study in the journal BMC Cancer found that single, young women with cancer appeared to be the most prone to psychosocial difficulties.
Moreover, patients' mental health before cancer contributes a great deal to their mental health after, Andersen says.
"The individuals most at risk are those most at risk for depression in general," she says. Depression affects nearly one in 10 adults. "In cancer patients, at least half who become clinically depressed after diagnosis have had a prior episode [of depression] before they had cancer." She also says that some of the people who are of concern include those who are alone or socially isolated, or who are coping with other stressful circumstances in their lives, such as losing a job or having a poor marital relationship.
Distress is not limited to patients alone. Researchers from Indiana University-Purdue University Indianapolis recently reported results of a study of 91 caregivers of people with lung cancer. More than half of those surveyed reported "negative emotional effects." (The psychological aftershocks of cancer are not all bad, though. About 40 percent of caregivers said their family relationships had improved.)
The recognition that distress affects care has led to a push for screening patients while they are in the hospital or doctor’s office (immediately after diagnosis and at times during their treatment). However, there’s no single unified measure of distress—in fact, more than 30 different sets of questions and criteria are in use—and different methods have different pros and cons. For example, filling out a short questionnaire may be quick and easy for patients, and it may accurately identify patients in distress, but it may also misidentify patients who are not. The best screening tool is one that identifies patients who are in distress and rules out those patients who are not—avoiding not only misdiagnosis but also overdiagnosis.
In 2009, a team of researchers based in Canada reviewed all the methods of screening for distress in the Journal of the National Cancer Institute. Some screening tests are a matter of one or two questions ("Are you depressed?" or "Have you lost interest?"). Another quick, widely used test is called the NCCN Distress Thermometer. Yet after reviewing the evidence for short screening tests, the study’s authors recommended a 20-item, self-reported scale from the Center for Epidemiological Studies. For that test, a person reads a list of criteria, such as "My sleep was restless" or "I talked less than usual," and indicates how many days in the past week these situations occurred.
The nonprofit Cancer Support Community developed a 25-item Web-based questionnaire, available to patients who are close to one of the 48 CSC sites nationwide. Users who visit a CSC site to complete the screening and referral program, which takes less than 10 minutes, receive a personalized plan with information about their distress level and available support resources, while their healthcare provider receives a summary of the results with alerts for follow-up care (visit cancersupportcommunity.org for details).
Those who are not close to a CSC location can visit the American Cancer Society website (cancer.org) and enter "measure my distress" in the search box. Results include a self-administered test to determine distress level and recommendations for what to do if distress is high.
Valerie Mueller, CSC Health Care Account director, says those who want to speak to a counselor can call the CSC hotline (888-793-9355) from 9 a.m. to 8 p.m. EST Monday through Friday.
Regardless of the method used, one advantage to widespread distress screening, in addition to catching patients before they slip through the cracks, is that it could help remove an unfortunate stigma associated with mental health. "When screening is routine for everybody, there is less stigma associated with it," says Elizabeth Rohan, a sociologist and a health scientist in the division of Cancer Prevention and Control at the U.S. Centers for Disease Control and Prevention in Atlanta. "Plus, if people are getting screened regularly, they are getting treatment sooner."
When screening is routine for everybody, there is less stigma associated with it. Plus, if people are getting screened regularly, they are getting treatment sooner.
No matter how, or when, distress is identified, the condition needs to be managed before it worsens. Unfortunately, many cancer treatment centers don’t have the resources to do this, and many insurance companies and Medicaid do not cover counseling or psychologic or psychiatric care. Yet, once clinicians diagnose the condition, they are obligated to address it.
The benefits to quality of life may be obvious, but treating distress goes beyond simply arriving at a better emotional state. Take cancer pain, for example. "Patients with higher levels of depression will give higher pain scores," Zabora says. "The healthcare team might treat the pain, but not identify the underlying depression." He says studies have also found that people who are distressed have a harder time making decisions about their care and have a poorer adherence to treatment.
Patients with higher levels of depression will give higher pain scores. The healthcare team might treat the pain, but not identify the underlying depression.
All of which can increase the cost of care. As an example, Zabora points to a landmark study from the world of cardiology. Researchers writing in Mayo Clinic Proceedings found that, on average, cardiac patients who suffered from distress had costs associated with re-admission to the hospital that amounted to about $7,000 more than patients who were not distressed.
While the economic benefits in cancer patients needs more study, "research in mental illness and within other medical populations shows large savings in medical billing through the treatment of emotional problems, including anxiety and depression, resulting in fewer visits to [general practitioners] and specialists alike," according to research from the University of Calgary and the Tom Baker Cancer Centre in Calgary, Alberta.
Just as there's no single way to treat cancer, there's no one prescription for dealing with distress. Some patients benefit from speaking with a mental health professional, (although some nurses and counselors don’t like the term "mental health" because it incorrectly labels patients) taking antidepressants or anti-anxiety medications, exercising, meditating or even getting a pet. Or, a combination of any of those or other options.
Cindy Walsten never took the antidepressants she was prescribed, as she sensed she was coming out of her dark waters with help from her support network. But she has also stopped trying to make herself go back to being the person she was before cancer. "I'm learning to accept I have a new way of life," she says. "Mentally I'm a different person. I can't think the same way I did before. The thought of cancer is always there."
She says she hopes, one day, whether or not the cancer leaves her body, it will at least leave her mind.
Correction: Due to an editing error, an earlier version of this article described incorrectly that the Commission on Cancer recommended Cancer Support Community's screening and referral program CancerSupportSource. The Commission on Cancer does not endorse particular groups or products. Updated June 24, 2013.