As we all know antidotal data is usually based on a relatively short time duration, and is centered usually on a single problem area. To that end we wanted our oncologist to have a greater degree of information over a longer term combined with the test data in his measure of her ability to contend with her disease and therapy.
Using his criteria as a guide we developed a “computerized log” that allows the patient to evaluate daily, 10 areas. Using a simple form to enter their information, the information is automatically graphed and a distress quotient determined and graphed as well.
When we visit the oncologist, we give him a printed version of the graphed results to assist him in ascertaining just how my wife is coping with her therapy and at the same time generate his questions for her.
This log is compatible with iPhone, iPod Touch, and iPad and will be available for free at www.ohmc-systems.com in November.
If you have a friend or family member under going Chemo therapy, I strongly recommend you read this article.
New Push to Treat Cancer Distress - WSJ.com
The Wall Street Journal
There is a new national push to screen and treat cancer patients for distress - emotional and psychological trauma that interferes with the ability to cope with cancer treatment but is often overlooked by doctors.
Hospitals and oncology practices around the country are adding programs to help patients with a side effect of cancer that often goes unnoticed and untreated by doctors: emotional and psychological distress.
With growing evidence that distress can negatively affect patient outcomes, there’s a new mandate to make screening for it part of routine care. Starting in 2015, the Commission on Cancer, which accredits centers that treat about 70% of all new cancers diagnosed in the U.S., will require providers to meet a new standard to evaluate patients for distress and refer them to programs for help.
“Identifying people in need of support is an integral step for modern oncology care,” says Stephen Edge, chair of the commission, a consortium of cancer organizations established by the American College of Surgeons.
More than half of cancer patients may suffer from distress, studies show—ranging from normal feelings of vulnerability and sadness to extreme, disabling anxiety and panic. Specific concerns include how they will be perceived by friends and family, whether they can resume work, how well they will cope with illness and treatment and how to pay their medical bills.
While it may not be surprising that cancer can prompt distress, what is striking is that distress can affect a patient’s physical progress. Not only can such feelings interfere with the ability to cope with the rigors of cancer therapy, experts say, but they can lessen one’s motivation to complete treatment. They can also interfere with the body’s immune system and have a negative impact on the course of the disease.
While some patients seek out support groups and other aid on their own, many “fall through the cracks,” Dr. Edge says.
Pressure to improve supportive care for cancer patients has been mounting since 2007, when the Institute of Medicine, which advises the federal government on health-care issues, warned in a report that cancer care often fails to address patients’ psychological and social problems. The National Comprehensive Cancer Network, an alliance of 21 of the world’s leading cancer centers, developed guidelines for distress screening in 1999, but by 2005, only three of its members reported routinely screening all patients.
Among other providers, standardized screening tools—including a distress “thermometer” that lets patients rate their distress on a scale of zero to 10—are still not widely used. In one survey of oncologists, only 14% reported screening for distress with an evidence-based tool and one third reported that they didn’t routinely screen for distress at all.
Because doctors are often focused on physical symptoms and treatment, studies have found, emotional and psychological issues may be overlooked or discounted. Patients, for their part, may be too embarrassed or reluctant to report their concerns. And while large cancer centers have the resources and staff to screen for distress and provide help, community hospitals and oncology practices—where about 85% of cancer patients in the U.S. get their care—often don’t have the time or funding.
One program the Commission on Cancer recommends to providers: CancerSupportSource, a new distress screening and referral program developed by the nonprofit Cancer Support Community. Using a Web-based, 25-item questionnaire, it asks patients to rate concerns in seven categories and identifies the type of support they want to receive, such as group meetings or one-on-one counseling, links to helpful websites or written information.
“The resources to help cancer patients deal with distress already exist in communities across America, so cancer centers don’t have to hire a whole new psychosocial staff,” says Kim Thiboldeaux, chief executive of the Cancer Support Community, which was formed in 2009 by the merger of support groups Gilda’s Club and the Wellness Community. It has more than 150 locations in the U.S. that offer counseling, classes and online aid, and links patients to such help as free taxi rides to chemotherapy appointments and copay assistance for medications.
Cindy Dalen, 52 years old, trained as a combat medic during a stint in the Army before becoming a hair salon manager. But she says nothing prepared her for her own medical crisis: a diagnosis of Stage 2 breast cancer last December.
At first she kept her emotions in check, especially in front of her family, but the first time she went to a doctor’s appointment without her husband, the tears came pouring out. A sympathetic nurse suggested she might benefit from the CancerSupportSource program, which was being offered at a hospital near her home in the Quad Cities area of Iowa as part of a pilot test.
After she completed the questionnaire online at home, the results indicated a struggle with depression and financial worries—as well as concern about hair loss from treatment. “There were all these things making me depressed and anxious that I hadn’t really thought about,” she says. After the screening, she spoke with her primary-care doctor, who helped treat her depression with medication. And she began attending group sessions at a Cancer Support Community center, where she connected with a financial adviser and someone who helped her with a wig.
More doctors and hospitals are beginning to acknowledge the importance of addressing patients’ broader needs. Last month, Greenville Hospital System University Medical Center in Greenville, SC, for example, announced plans to open a hospital-based Center for Integrative Oncology and Survivorship in partnership with the Cancer Support Community. The center plans to offer screening and referral programs, as well as oncology rehabilitation services including exercise, massage, acupuncture and nutrition counseling.
Mark O’Rourke, medical director of the Greenville survivorship program, says distress evaluation can identify patients with overwhelming distress and mental-health issues so they can be immediately referred to the right professionals. He also hopes it will comfort patients with the knowledge that their concerns are normal and that physicians care about helping them cope. “It reminds them we are on their side,” says Dr. O’Rourke, and “concerned about things besides the exact dosage of the drug and the results of their surgery.”
Write to Laura Landro at firstname.lastname@example.org
A version of this article appeared August 28, 2012, on page D3 in the U.S. edition of The Wall Street Journal, with the headline: To Treat the Cancer, Treat the Distress.
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