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New US survey gives voice to cancer patients and caregivers, reveals gaps in cancer care

21 Sep 2015
New US survey gives voice to cancer patients and caregivers, reveals gaps in cancer care

New data from The 2015 Cancer Experience: A National Study of Patients and Caregivers reveals that overall satisfaction among US cancer patients and caregivers with the care they received has improved significantly since the study was first fielded in 2012.

The survey results also mirror the ongoing national health care debate and reveal significant gaps between patients’ expectations and the quality of care they receive.

While having access to advanced oncology therapies is important, survey respondents indicated that health care providers need to address their dissatisfaction with the lack of care coordination, confusion and frustration surrounding health care terminology (literacy), and the inability to obtain timely information from their care team.

According to Gerard van Grinsven, President and CEO of Cancer Treatment Centers of America, the company that sponsored the survey, it is critically important for health care leaders to understand and design care systems that enhance patient satisfaction.

“As leaders, we must integrate clinical excellence with service excellence to close any existing gaps that might negatively impact a patient’s care experience,” said van Grinsven.

“The ongoing insights from this annual survey should guide our thinking about how delivering outstanding clinical care and superior patient experiences converge to make a meaningful difference for cancer patients and their families.”

Key findings from this year’s survey include:

Coordinated care is the key to improving overall patient satisfaction

Sixty-two percent of cancer patients say that having a specific individual coordinate their care is important; however, only 32 percent experienced this type of coordination while undergoing treatment.

Among patients who currently have coordinated care, the majority (74 percent) were ”completely satisfied,” suggesting a direct correlation between the delivery of coordinated care and the overall patient experience.

Lost in translation: patients and caregivers struggle to understand complex health care terminology

Less than half of patients (46 percent) and caregivers (49 percent) understand terms such as genomic testing, immunotherapy, precision cancer treatment and molecular testing.

Even fewer know the benefits, suggesting there is a lack of clear and important communication between care teams, patients and caregivers.

While the field continues to develop advanced therapies, patients and caregivers must come away with a clear understanding of the benefits and risks of specific treatment options in order to make informed decisions about their care.

Lack of confidence in care teams causes patients and caregivers to switch providers

Nearly 20 percent of caregivers switched their patient’s health care provider because of a lack of confidence in his/her treatment plan and care team.

This finding underscores the need to establish a coordinated and trusting relationship between the provider’s care team and patients and caregivers, as well as the influence caregivers have on patients’ selection of a treatment provider.

The next generation of patients is more actively involved and will “shop” providers

Nearly 40 percent of cancer patients seek a second opinion, and these are typically younger patients.

This finding suggests that younger cancer patients, in general, take a more proactive role in their treatment decisions.

It also suggests there is considerable uncertainty about their initial diagnosis, including expectations about longevity, a lack of implicit confidence in the first opinion, and/or the fact that we are living in an age of far more enlightened consumers who are seeking more comprehensive information about their treatment options.

“It is great news that the satisfaction of cancer patients is improving, but cancer care as a whole still needs to improve to make a bigger difference for patients, especially in ways that increase comfort, care coordination and access to essential information,” said Maurie Markman, M.D., President of Medicine & Science at Cancer Treatment Centers of America.

“Clinical excellence alone cannot replace the need to focus attention on patient comfort and coordinated care.”

Source: Cancer Treatment Centers of America