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Americans With Chronic Disease Get Mixed Messages From Caregivers

Lack of care coordination leads to medical errors

Millions of Americans who suffer from at least one chronic condition say they lack confidence in the health care system, get conflicting information from health care providers and believe they undergo unnecessary testing, according to a new survey from the AARP Public Policy Institute.

“Health spending for an older person with just one chronic disease is more than twice that of a healthy person,” says John Rother, AARP policy director. “Chronic conditions are often preventable, and they take a terrible toll on millions of Americans. Our fragmented health care system makes it incredibly difficult for chronically ill patients and their caregivers to get the appropriate care they so desperately need.”

More than 70 million Americans—four out of five of those 50 and older—have at least one chronic illness, and multiple conditions mean higher cost. While the average medical cost of Americans over 50 was $6,400 in 2005, spending on people with five or more conditions averaged almost $16,000.

Researchers polled 2,453 chronically ill people with the most commonly reported conditions, such as arthritis, cancer and diabetes, and 978 caregivers who helped daily with tasks like managing medication, dressing and medical appointments. Findings were presented in “Chronic Care: A Call to Action for Health Reform,” the latest in AARP’s “Beyond 50” series of annual reports on issues important to older Americans.

Study author Linda Barrett, an AARP senior research adviser, says communication problems were a common theme among those surveyed. More than one in five of the patients (21 percent) said their health care providers did not do a good job of communicating with each other, and nearly 20 percent said their health suffered as a result.

The survey also shows that a lack of medical care coordination has serious impact: Nearly one in four patients (23 percent) said they experienced medical error during a serious health episode. Medical errors were even more common among chronically ill people who were uninvolved in handling their conditions—36 percent of the “less engaged” respondents said they had experienced a medical error.

To that end, the researchers recommend health care professionals help patients participate in their own care by “giving them information they will understand and act on” and by treating caregivers as partners.

The study also finds that fragmented delivery of care, poor transitions between settings such as hospitals and nursing homes, and payment incentives that don’t recognize the value of better integrated services are barriers to improving care.

Because older adults with chronic conditions tend to take multiple medications, the report also recommends that “patients or caregivers should keep an up-to-date personal medication list that includes a record of all patient prescriptions, nonprescription medications and dietary supplements.”

Key findings from the survey and report:

  • 11 million Americans live with five or more chronic conditions.
  • 26 percent of chronically ill patients lack confidence in the health care system.
  • 30 percent said their health care provider did not have all the necessary information when he or she arrived.
  • 24 percent received conflicting information from two or more health care providers.
  • 16 percent received unnecessary medical tests.
  • 18 percent said their transition from a health care facility to home was not well coordinated.


Elizabeth Agnvall is a contributing editor at the AARP Bulletin.

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