"Distress" experienced by cancer patients

[Donna G]

Boy I wish I could find the article on the web. "new focus on the distress experienced by cancer patients" by Amy Dockser Marcus , Wall Street Journal.

It discusses especially with lung, pancreatic and ovarian cancer how certain cancer centers have developed a tool to evaluate the stress these diagnosis cause and when to treat.

RED FLAGGS Excessive worries, Fear, Sadness, Confused thinking, Despair or loss of hope, Severe family problems(Marriage crisis, child having problems in school) Spiritual crisis, severe financial problems.

COPING STRATEGIES Explore spiritual beliefs, practice meditation, keep a journal, join a support group, take medication, talk to a counselor, create a support team of family members and friends.

Hope I find it all printed as in todays paper somewhere on the net, anyone else see it? Donna G I FOUND IT

Posted on Sat, Jan. 15, 2005

New focus on the 'distress' experienced by cancer patients

BY AMY DOCKSER MARCUS

Wall Street Journal

Leading cancer organizations are focusing new attention on a problem that is often overlooked when treating cancer: the anxiety and depression that can affect patients and interfere with treatment.

A group of 19 major cancer centers, along with the American Cancer Society, have developed a set of guidelines for evaluating a patient's level of distress. The guidelines involve a simple screening test in which patients go through a checklist of possible causes, from insurance issues to family problems, and rank themselves on a 10-point scale. Above a certain level, they are encouraged to seek help.

While virtually all cancer patients experience some level of distress, the anxiety, depression and fear can reach a point where it affects a person's daily life and his or her ability to get needed treatment. Patients may find it difficult to get out of bed, much less attend appointments and chemotherapy sessions. Some distraught patients avoid acknowledging their disease and cancel appointments.

Distress can also cause sleeplessness and confusion that may result in failure to take medication properly, potentially lowering patients' chances of a cure.

Distress is an umbrella term doctors use to describe a range of responses, from fear to depression to spiritual crisis. Because many of the symptoms of distress — lack of appetite, nausea, weakness — mimic symptoms of cancer treatment, oncologists say it is important to understand the cause of the symptoms in order to know whether a change of regimen is called for, or if the patient really needs a mental-health professional or social worker.

But at busy oncology offices, many doctors don't have the time to figure out if a patient is sleeping, eating or going about regular activities. And patients are often too embarrassed to ask for help or don't know how to recognize the signs.

So these guidelines focus on helping the patients themselves identify when there is a problem that may keep them from following their treatment.

COPING WITH CHRONIC STRESS

The push by cancer groups to address distress comes at a time when new therapies are enabling more patients to live longer with the disease.

As cancer is increasingly considered a chronic disease — with need for ongoing, sometimes lifetime monitoring and treatment — there is growing recognition that more patients will be coping with chronic stress. And because many of the newer treatments involve oral medications taken at home, rather than intravenous therapies in a medical setting, there is increasing concern that distress could cause patients to slip from their regimens without supervision.

"Screening for distress" should be a standard part of any visit to the oncologist's office, akin to the way questions are already routinely asked about physical symptoms, says Michael Levy, director of supportive care at the Fox Chase Cancer Center in Philadelphia and a member of the panel that developed the guidelines.

The guidelines aim to set out a simple, rapid screening test that enables patients to understand whether they are experiencing distress that might affect their ability to cope with cancer.

Using a 0-10 scale, patients are asked to mark on a "distress thermometer" how much distress they experienced in the previous week, including the day they take the test.

Patients are then given a list of potential causes and asked to check off the areas that are bothering them.

It could be practical problems, such as difficulties arranging child care. Other possible issues include family strains; spiritual crises, such as a loss of faith; physical problems, such as fatigue; or emotional stress.

A 5 or above on the distress scale is considered significant enough to merit some kind of treatment, such as meeting with a psychiatrist.

Even patients who score lower on the distress scale are advised to seek out information about coping, says Jimmie Holland, a psychiatrist at Memorial Sloan-Kettering Cancer Center in New York and chairwoman of the panel that developed the guidelines.

ASKING FOR HELP

The issue of patients experiencing problems that lead to noncompliance with treatment isn't confined to cancer patients. According to World Health Organization statistics, only around 50 percent of people follow their doctors' orders when it comes to taking prescription drugs, for reasons including forgetfulness and a fear of side effects.

But distress is particularly acute among cancer patients. A study by researchers affiliated with Johns Hopkins University estimated that more than one-third of cancer patients experience significant levels of distress that require some kind of help — but only 5 percent of those ever get it.

With some forms of the disease that have lower survival rates, such as lung, brain and pancreas cancer, the number of distressed patients is even higher, with almost half of patients reportedly experiencing anxiety levels that need treatment.

Shirley Howe of New York City, age 60, says when she was diagnosed with ovarian and uterine cancer, she stayed in bed for a week. She says she felt so weak and fragile she couldn't even sign checks to pay her bills, and her fears about the disease made it difficult to understand the information her doctor gave her. Her oncologist never knew, she says. She finally realized she needed help and asked him for the name of a mental-health counselor.

The new screening guidelines aim to help patients like Howe recognize distress symptoms, but similar evaluation guides have been studied inside centers like Memorial Sloan-Kettering as a way to help health professionals monitor patient levels of distress. The 19 cancer centers involved in developing the guidelines are part of a group called the National Comprehensive Cancer Network that has developed many guidelines for cancer care.

Some cancer survivors who have been shown the guidelines by researchers say anxiety was a huge part of their cancer-treatment experience, but often no one asked them about it.

Yvette Muyette, 57, was diagnosed with larynx cancer in 2000. Even when doctors told her her prognosis was good, she said, "All I could hear was 'you're going to die, you're going to die.' "

She said she broke doctors' appointments because she was frightened by seeing other patients who had difficulty speaking because their voice boxes were removed during treatment. Counseling and anti-anxiety medication eventually helped her to follow her treatment regimen, she says, but she had to seek it out on her own.

David Kissane, chairman of the department of psychiatry and behavioral sciences at Memorial Sloan-Kettering, says a focus this year will be on studying whether group therapy can improve adherence to treatment and prevent depression in cancer patients.

[Elaine]

Here's a link. I think this is the article you mean.

http://www.detnews.com/2005/health/0501 ... -57519.htm

[teresag]

The National Comprehensive Cancer Network has developed a set of distress management guidelines. Here's a link to the "patient" version:

http://www.nccn.org/patients/patient_gl ... ntents.asp

[Donna G]

Yes, I new I could count on you guys! The article in the Pioneer Press ( St. Paul newspaper ) was longer than the one carried in Detroit, but the site Theresa added brings in the rest of the info. I just really feel that the emotions and stress of this disease is really hard and am so glad to see that the Cancer Clinics are evaluating how much this stess affects the outcome. This site is a great source of support for lung cancer patients especially where we need it so much and there are so few person to person groups. Donna G

[Donna G]

I FOUND THE ARTICLE. SEE ABOVE FIRST POST. Donna G

[Connie B]

Thanks Donna for sharing this with us. I think its one of the best articles I've read in a LONG time. THANK YOU!

[dadstimeon]

Interesting. Thanks for sharing.

[Elaine]

I find it amazing that the medical community doesn't KNOW that patients with serious cancers aren't experiencing distress! What is wrong with this picture!?

I am glad someone has come up with something that will help patients let Drs know.

I wonder, however, how often this "scale" is actually being used.

Has anyone's Dr even used this with anyone on the board?

Just curious.

Thanks Donna for finding the whole article. I think I just found an excerpt.

elaine