Newswise — Nearly four in ten older adults say that managing their health care needs is difficult for them or their families, that medical appointments or tests get delayed or don’t get done, or that all of the requirements of their health care are too much to handle, new Johns Hopkins Bloomberg School of Public Health research suggests.

The findings are published in the October issue of the Journal of General Internal Medicine.

“Medical providers must be aware that when they ask older adults to take a new medication or suggest they see another doctor that this is happening in a broader context of treatment,” says study author Jennifer L. Wolff, PhD, an associate professor in the Department of Health Policy and Management at the Bloomberg School. “High quality care is not only about a single disease or visit, but rather the overall treatment plan across multiple providers. If we look at each visit in a vacuum, the health of these older adults could really suffer.”

While Wolff and her Hopkins co-author Cynthia M. Boyd, MD, MPH, found a high level of what they call “treatment burden,” they also found that the vast majority of older adults surveyed prefer to play an active role in making decisions about their health care either in conjunction with their doctors (85 percent), or their family or close friends (96 percent). The strong degree of interest in participating in decisions was a surprising finding given that previous surveys using smaller samples or comparisons by age group have shown that those over 65 prefer to take a more passive role in health care decision-making. Two-thirds of older adults said they were managing their own health care independently. Those who delegate the management of health care activities to others tend to be older and sicker than those who manage their own care, the researchers found.

For the research, Wolff and Boyd examined the results of the 2012 National Health and Aging Trends Study, a nationally representative survey of 2,040 Medicare patients age 65 or older. Participants were asked a series of questions to understand the roles they play – and wish to play – in their own health care.

Older adults are among the heaviest users of health services and their care is often not well coordinated among their various physicians. This can be problematic for a variety of reasons including the high prevalence of cognitive and physical decline that can impair the ability of older patients to make sense of the many demands their doctors may make of them. Doctors are not typically trained or have not traditionally been reimbursed by Medicare for taking extra time to work with patients and families to ensure that they are getting what they need out of their health care experience.

The system also isn’t always welcoming of the involvement of friends of family in medical decision-making, Wolff says, mainly because of concerns over privacy and practical considerations, too.

“What we have found is there isn’t a one-size-fits-all approach to caring for adults,” she says. “The health care system is complex and it is important to understand and incorporate individual patient preferences and perspectives about care. We need to ask these patients not only about their urgent health needs but their overall goals and experiences with care.”

“A Look at Person-Centered and Family-Centered Care Among Older Adults: Results from a National Survey” was written by Jennifer L. Wolff and Cynthia M. Boyd.

The research was supported by grants from the National Institutes of Health’s National Institute of Mental Health (K01MH082885), the National Institute on Aging (1K23AG032910), AFAR, The John A. Hartford Foundation, The Atlantic Philanthropies, The Starr Foundation and an anonymous donor.

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Journal of General Internal Medicine; K01MH082885; 1K23AG032910