Scoring poorly for understanding health information put patients at higher risk of death in study of acute admissions for heart failure. Failing to fully understand the hospital discharge information or difficulty filling in forms – “not necessarily” to do with intelligence – also correlated with death occurring sooner after being sent home with a care plan.

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Even “some people who are highly literate or highly educated may have difficulty reading and understanding information.”

The American Heart Association (AHA) selects two key findings from the study published in its journal:

  • “Acute heart failure patients are more likely to die within 2 years of hospitalization if they have trouble understanding and using health information”
  • “Living with heart failure can be complex, so patients need to let their health care providers know if they don’t understand their instructions.”

Heart failure is an insufficiency with pumping blood (two animated images in the AHA’s interactive cardiovascular library show how the normal and the failing heart looks) – and acute admission may be needed for new or worsening symptoms, which can include breathing difficulty, weight gain from water retention and leg swelling.

The study tracked the numbers of deaths among 1,379 patients with an average age 63 discharged after hospitalization for heart failure.

When patients were admitted, nurses ran a screen for health literacy (against three questions; see below). With an average follow-up time of 21 months in the study published in the Journal of the American Heart Association, patients with low health literacy were 34% more likely to have died than those with higher health literacy.

This finding was after taking account of the effects of age, sex, race, insurance status, education, other medical conditions, and length of time in hospital. Before this adjustment, the raw figures were that the deaths during the study period numbered:

  • 124 (38.3%) among the 324 patients with low health literacy
  • 279 (26.5%) out of the 1,055 patients with higher literacy scores.

Lead author Dr. Candace McNaughton, assistant professor of emergency medicine at the Vanderbilt University Medical Center in Nashville, TN, says:

“The treatment for heart failure can be complex and difficult to understand. It’s important for patients to let their health care providers know if they don’t understand the directions they were given for their medications, salt and fluid intake, and weight monitoring.”

Dr. McNaughton adds: “Some people who are highly literate or highly educated may have difficulty reading and understanding health care information.”

The patients in the study scored themselves on a 5-point scale in answer to three questions about difficulties with literacy specifically affecting their disease management:

  • How often do you have problems learning about your medical condition because of difficulty understanding written information?
  • How confident are you filling out medical forms by yourself?
  • How often do you have someone (like a family member, friend, hospital/clinic worker or caregiver) help you read hospital materials?

Each answer was scored as follows: 0 for all of the time; 1 for most of the time; 2 for some of the time; 3 for a little of the time; and 4 for none of the time.

The threshold used to define people as having low health literacy was a total score of 9 or below from the three answers. So having trouble for a little of the time or more against all three questions would have triggered the illiteracy measure.

The threshold is almost met if someone has no trouble with two elements but considerable trouble with the third – for example, if they say they have no problem with form-filling confidence or needing help, but have difficulty understanding written information most or all of the time.

The literacy test is known in research as the “brief health literacy screen” or BHLS and was used routinely from 2010 for all admissions across all departments at the hospital.

The authors report that the death risk was higher even across better levels of health literacy – that is, even scores up to 13 and 15 on the BHLS were correlated with higher mortality.

This means “patients with anything less than optimal health literacy who are hospitalized for acute heart failure may warrant additional health resources, assistance, discharge planning, or coordination of care to facilitate the transition from hospital to outpatient care,” the paper says.

Information for patients from the AHA points out that levels of health literacy do not necessarily match levels of intelligence – and that poor levels are commonly related to problems with access to health information or health care. It cites a few specific issues, too, with:

  • Language barriers
  • Reading an understanding medical numbers and terminology
  • Ability to follow instructions.

The AHA offers a solution in the form of simply not being shy about problems and feeling free to “keep asking questions” – such as, “How exactly do I take this medication?” and “Can you help me understand the material you gave me?” – as well as to get help with forms.

Dr. McNaughton says health care providers also have a responsibility: “Having health literacy measured by nurses during routine care may be an important way for us to determine which patients may need more help after discharge.”

Research is still needed, though, to determine “what exactly to do for those with low health literacy.”

“Should we simplify their medication regimen? Follow them in the outpatient setting more frequently or sooner after discharge? Give them extra resources like home health care? We don’t know the answers to those questions yet,” Dr. McNaughton says.