NEW YORK (Reuters Health) - In a new study, the impressions of breast cancer patients about the quality of care they received often differed from medical definitions of quality -- in part because the patients were judging their experiences by a different set of standards.
Patient perceptions are increasingly important to hospitals and other healthcare providers that find their payments from insurers and the government tied to performance and patient evaluations.
To see what influences a woman's perception of her care, and how that compares to its actual quality, researchers in New York interviewed 374 women treated for early-stage breast cancer.
They found that most of the women tended to underestimate the quality of care they received. And often, their views were most shaped by the experience of getting care and by how much they trusted their doctors.
"There are a lot of obstacles that you have to get past in order to get what you need, and as a system we need to make it easier to get care," said the report's lead author, Dr. Nina Bickell, an associate professor at the Mount Sinai School of Medicine in New York.
Bickell's group examined data from women who had surgery for their breast cancer at one of eight New York City hospitals between October 2006 and September 2009.
The women were surveyed over the phone when they first entered the study, and again six months later. The researchers then looked at the women's medical records to see what care they actually got.
Just over half -- 55 percent -- said the care they received was "excellent," whereas 88 percent actually got good-quality care in line with medical guidelines.
"The thing that's always been fascinating is the disconnect of what we count as quality, and what we see and feel as quality," Bickell told Reuters Health.
The researchers found several aspects of the treatment process shaped how the women viewed their care.
Of the 205 women who called their care "excellent," more than half (124) also considered their process of obtaining care to be "excellent." In comparison, only 28 of 169 women who said they received less-than-excellent care thought the process of getting care was "excellent."
Women who said they received "excellent" care were also more likely to report excellent treatment by medical staff, to say they knew which doctor to go to with questions or concerns and to say they had good trust and communication with their doctor. They were less likely to mistrust the medical system.
"It was really what it took to get the care," said Bickell. "Ultimately they got it, but it's what they had to go through to get the care."
For black women, however, there was something else at play.
The researchers found that only 39 percent of black women said they got "excellent" care compared to 60 percent of whites and 62 percent of Hispanics.
Overall, black women were also less likely to trust their physician and more likely to perceive racism in the process of getting care. But, the researchers found there were no differences in the actual quality of care black women received compared to whites and Hispanics.
"Thus, something is being communicated to black women that results in their lower levels of trust and higher perceived racism," the researchers write in the Journal of Clinical Oncology. "These sentiments vary among black women, which suggests that there are ways to redress this critical issue."
"This is a very specific and quite significant finding that black women perceived racism in the way they were getting care. That's something that's got to change," said Jessie Gruman, president of the Center for Advancing Health in Washington -- an organization that works on patient engagement.
Gruman, who was not involved with the new study, told Reuters Health that care can conform to guidelines and standards, but it won't be good enough if it's provided in an unpleasing way.
Bickell said that it comes down to hospitals, doctors' offices and other players in the healthcare delivery system to change the culture on the best way to take care of patients.
That means making it easier for patients to make appointments, get referrals and test results, letting them know what the next steps are and telling the patient what they need to know to make it happen, she said.
"I think we can do it, and I think we have to do it," said Bickell.
The researchers said their findings may not apply to all communities or populations, because they only looked at inner-city women who spoke English or Spanish.
SOURCE: bit.ly/HDUool Journal of Clinical Oncology, online April 9, 2012.