(HealthDay) -- A small study gives a snapshot into the financial anxieties that plague many patients with advanced cancer and their spouses, even as they struggle against the disease itself.
Four of every five such American patients and their spouses-caregivers in the study said they had concerns about meeting medical costs and suffered "financial stress." Worries about paying medical costs also were tied to lower mental and physical health, the study found.
"Across the board, the longer they were in treatment or reaching the end of life, there were [financial] concerns. There were concerns whether it came to their own well-being or their families' well-being," said study lead author Fay Hlubocky, a clinical psychologist and ethicist at the University of Chicago Pritzker School of Medicine.
She reported the findings this week at the annual meeting of the American Society of Clinical Oncology (ASCO), in Chicago.
The study involved 52 patients with advanced cancers, all of whom were enrolled in clinical trials, and their spouses. While patients in clinical trials are a slightly different group than that seen in the general population (because some expenses of treatment may be paid for), Hlubocky said the numbers from her study "are borne out in the literature generally" for patients battling cancer outside of such trials.
Patients ranged in age from 28 to 78, with a median age of 61. All were married, two-thirds had more than a high school education, and just over half made less than $65,000 a year. Forty-five percent of the patients were employed, as were two-thirds of spouses-caregivers. Each patient and their spouse were asked about a wide range of financial concerns, and they also took part in standard tests assessing depression, anxiety, quality of life and mental/physical health.
The researchers found that at the beginning of the study, 82 percent of the patients and 69 percent of the spouses reported "medical cost concerns," while 79 percent of the patients and 81 percent of spouses said they had "financial stress." Queried a month later, the level of "medical cost concerns" had risen -- 85 percent of patients and 72 percent of spouses now cited such worries.
People who encountered "unexpected" costs related to care had higher anxiety and depression scores than those who did not, the study found. Quality-of-life scores were lower for patients who had financial worries, and the physical and mental health of the spouses-caregivers seemed to decline as medical care cost worries persisted, the study found.
What were patients and their spouses worried about? According to Hlubocky, it ranged from the "little things" -- parking and hotel accommodations, gas and mileage getting to and from doctors' appointments -- to much larger concerns, including insurance coverage (or lack thereof), how to provide for loved ones after death, and even bankruptcy.
Some participants expressed real anxiety in meeting their financial obligations. "We had to pay for an additional hospitalization for a small-bowel obstruction, and insurance would not cover it," one patient told the researchers. "If we had to sell our house to pay, we'd do it."
Other patients felt their illness threatened their livelihood. "My employer has an attendance policy that if violated too many times will result in termination," the patient said. "My appointments have to be midday usually." The patient considered going on disability, "but that would not pay for my insurance."
One expert said these types of fears are all too common for people coping with cancer.
"It is certainly true that the impacts beyond diagnosis and treatment are tremendous for cancer patients," said Dr. Sylvia Adams, ASCO spokeswoman and assistant professor in the department of medicine at NYU Langone Medical Center, in New York City. "They do face several challenges. And as this article shows, there is a substantial number of patients who feel that there is anxiety and depression and lower quality of life associated with worries about financial stability."
Adams said that, even for people with insurance, costs can quickly escalate. These include medication co-pays, transportation costs, time missed from work, child-care issues and the cost of in-home medical devices.
However, both Hlubocky and Adams stressed that, as challenging as things can be for cancer patents, help and resources are out there. First and foremost, they said, is to make sure you have a social worker on your cancer-care team who can point you in the right direction for help.
"There's lots of different foundations and coalitions out there that are willing to help," Hlubocky said. "Certain hospitals, you can just go and talk to the social worker and try and find out what's the best way to help cover some of the financial problems. Many patients don't know. A social worker is an absolutely wonderful person to have on your team."
Adams agreed. "It is very important that the treating team has a multidisciplinary aspect, and that it involves psychological support as well," she said, since the stress of dealing with cancer and its treatment can be overwhelming.
Findings presented at medical meetings are typically considered preliminary until published in a peer-reviewed journal.
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There are resources for cancer patients and their caregivers at the American Society of Clinical Oncology.