Many middle-aged Americans lack basic health literacy

OK, Boomers, it turns out Millennials and Gen X also struggle navigating the often-confusing and overwhelming world of health care. 

A new Northwestern University study has found one in three middle-aged American adults ages 35 to 64 cannot consistently read prescription instructions correctly, understand medical forms or recall details from doctor visits involving chronic condition diagnoses. These skills - often referred to as health literacy - are critical for managing common conditions such as high blood pressure, high cholesterol and diabetes, which commonly emerge in midlife.

We didn't think the problem was going to be this pervasive, but to think that people are reaching their mid to late 30s and 40s, and they haven't been onboarded properly to perform basic personal health tasks is pretty powerful. This work is not about pointing out what people can't do, but rather, can we confuse patients less?" 

Abigail Vogeley, corresponding lead author, research fellow and neuropsychology doctoral student in the Center for Applied Health Research on Aging, Northwestern University Feinberg School of Medicine

While previous research has found more than half of adults 65 and older have a difficult time engaging with the health care system, this is the first study to focus on middle-aged adults. 

The study will be published June 10 in the Journal of General Internal Medicine. 

"In midlife, there's no clear 'user manual' for engaging with health care," said senior author Michael Wolf, the center's director and faculty in the department of medicine at Feinberg. "Our findings suggest we're not adequately preparing people to engage and manage their care."

A sample size of 1,000 participants

The study included 1,000 adults receiving care at Northwestern-affiliated hospitals and federally qualified health centers throughout Chicago. To qualify for the study, participants had to have had at least one doctor appointment within the past year or have a visit scheduled in the next six months. 

Participants completed interviews and hands-on tasks, such as interpreting prescription labels (e.g. should it be taken with food? Can you drink alcohol or be exposed to sunlight while taking them?), recalling physician instructions after watching a clinical video in which they were diagnosed with GERD and reviewing written care materials, among other typical health tasks.

"Doctors may ask patients, 'Are you taking your medicine?' but we don't ask how they're taking it, so people might think, 'I am doing great, I'm taking my medicine,' but they don't realize they're making mistakes," Wolf said. 

A breakdown of the findings

The researchers assessed health literacy, health self-management and self-reported physical function using a variety of screening tools. 

They found:

• 32.5% had limited health literacy skills
• Lower health literacy was linked to lower income, less education and unemployment
• Those with poorer skills had more chronic conditions, were prescribed more medications and performed worse on cognitive testing 

"Patients differ not just by demographics, but by their ability to manage their care," Vogeley said.

Currently, many patient materials are written at a high school or college level. The authors recommend simplifying health information using plain language at a 6th to 8th grade level. 

They also highlight broader implications for the health system.

"Billions are spent developing drugs, but far less is invested in helping patients use them correctly," Wolf said. "Improving understanding could significantly improve outcomes and reduce harm."

Chronic conditions in middle age

A large body of previous research has found about two-thirds of U.S. adults from age 45 to 64 manage at least one chronic condition, with a third managing multiple chronic conditions. 

"We just assume people in middle age may know what they are doing when it comes to their health, even though this is a time where chronic conditions start to appear, and they're often delayed in their diagnosis because of how patients variably use health care," Wolf said. 

If patients fail to manage chronic conditions properly, it can result in hospital stays and worse health outcomes, Wolf said.

"The focus has always been on older adults, whom we might assume misdose medications because of cognitive decline, but our findings suggest health literacy is suboptimal even in middle age," Vogeley said. "Middle-aged adults become older adults, so if we look at this from an optimistic perspective, this can be a place for intervention."