Disease management

Stick to basic four to manage CHF

Simplify for patients with low literacy

To understand the challenge of heading the heart failure management program at MetroHealth Medical Center in Cleveland, you have to go on rounds with Glynis J. Laing, PhD, RN, CNAA, disease manager for heart failure at the large county medical facility.

"Only 40% of my patients fit the typical profile for congestive heart failure [CHF] patients — adults over 65 with hypertension and CHF. The other 60% are as young as 20. Many have substance abuse issues. I didn’t realize that crack cocaine will push you into CHF until I worked here," she says. In addition to their youth and substance abuse history, many of Laing’s patients are indigent and have low literacy skills.

"These people are frequent flyers. They come through the emergency room and get admitted to the intensive care unit [ICU]," she says. And that’s where she first meets with patients and starts working on patient education.

Laing makes rounds daily in the ICU with the social worker, case manager, and the charge nurse. "Occasionally, patients are admitted to a general medical floor instead of the ICU, and the case manager or resident on the floor calls me, and that’s how I find my people."

The first step in her CHF management approach is to review the patient’s chart. "I check to make sure they are on appropriate meds. If they aren’t on an ACE inhibitor, I check with the resident to see why not." After a review of the chart, Laing talks with the patient. "For many of these patients, it’s the first time anyone has told them they have a heart problem. They don’t know what CHF is; it’s a new diagnosis for them."

If the patient is one of Laing’s "frequent flyers," she asks them what caused their current admission. "A lot of times with this population, it’s a financial problem. The patient ran out of their prescription and it’s a week before they get their next Welfare check." At that point, she starts looking for solutions. "I hook the patient up with our case manager to get them Medicaid or disability. I beg drug samples."

She’s learned through trial and error that everything from performing a psychosocial assessment to patient education must be kept simple with this population. To assess the patient’s environment, Laing asks the following:

• Who does your grocery shopping?

• Who cooks your meals?

• How do you come to the doctor?

"Many times patients tell me they come to the doctor by dialing 911," she says. "I try to explain that perhaps a better option would be to schedule an appointment."

Many of her patients eat most of their meals at homeless shelters. "The personnel at the shelters have been very cooperative about working with me on low-salt diets. The shelters have been very receptive about not adding salt to the food and simply putting salt on the tables instead," she says. "I used to also ask patients who did the chores around their house until I realized that if you live in a rooming house, dusting and vacuuming are not high on your list of priorities," she adds.

Once Laing establishes a fairly good rapport with patients, she assesses their literacy skills before beginning any patient education. "I ask them how many years of school they’ve completed," she says. "If they are older and graduated from high school, I assume they can read at a fairly good level. If they’re younger and they graduated from a Cleveland public high school, I assume nothing. I had no idea how many people cannot read well enough to follow commercial patient education materials." She uses a standard literacy assessment tool called the Rapid Estimate of Adult Literacy in Medicine (REALM).1 "You must tailor your materials to the literacy level of your patient. It seems so basic. We say it so often. But until you know their literacy level, you don’t know where to aim."

The lowest reading level on the REALM scale is a third-grade level and the highest is 12th grade. "My patients average about a fifth-grade reading level. Most commercial education materials are written at an eighth-grade level. There are too many words on a page. The type font is too small. It’s way over their heads."

In addition to their low literacy skills, most of Laing’s patients have an external locus of control. "They don’t believe they can be proactive," she says. "They are very short-term focused. Their attitude is, Tell me what I need to know so that I can get out of here.’"

Laing soon realized that the best way to deliver important CHF management information to her patients was to talk in bullets. "I skip the elaborate explanations about the circulatory system," she notes. "I tell them that their hearts simply aren’t pumping right, and then I give them the four main components of CHF management."

The components are as follows:

o Medication compliance. "I simply tell patients they must take their medication every day just the way the doctor told them to take it." (See box at right for a sample of her instruction sheet for ACE inhibitor use.)

To help her patients take their medications even when they can’t read the labels, Laing shows them their pills and counts them out into an egg carton. "To show them when they should take which pills, I draw a full sun to indicate morning doses, and a sun setting for evening," Laing says. "One patient used a paper plate with three sections for morning, noon, and night. He knew the pills by how they looked."

"Unfortunately, pharmacies sometimes switch brands of generic pills without telling patients," says Laing. "One month their morning pill may be blue, and the next month it might be red. That can really confuse them."

o Low-salt diet. "We don’t get really nervous about salt since the patients are on diuretics. I don’t expect them to count milligrams. I just tell them to put the salt shaker away and use frozen or fresh foods more often than canned or boxed foods."

o Exercise as tolerated. "I look at the patient to judge how conditioned I think they are. If they’re in a wheelchair, I just urge them to lift cans. If they can walk, I tell them to start walking around their house. Once they feel comfortable walking around the house, I tell them to start walking around the yard, then eventually around the block."

o Daily weights. "I used to give patients a weight range. I’d say if your weight is below 160 or above 165, call your doctor. That didn’t work," notes Laing. "Now, I skip the ranges. I tell them if your weight is 167, call your doctor. They simply could not grasp the concept of a weight range."

A small number of Laing’s patients cannot read numbers. "For those patients, I teach them how to do an ankle assessment instead of relying on daily weights. I tell them, this is how your ankles look when they’re OK. If they look different than this, call your doctor." In addition, Laing helps patients figure out how their body feels when they are putting on fluid. "I tell them to think about whether they’re having trouble lying flat.

"These people are survivors. If you talk to them in bullets, if you say, This is what you need to know,’ you can make a difference," she says.

Reference

1. Davis TC, Long SW, Jackson RH. Rapid Estimate of Adult Literacy in medicine: A shortened screening instrument. Family Med 1993; 25:391-395.


ACE Inhibitor Instruction Sheet

To get vital information about ACE inhibitor use across to low literacy patients at MetroHealth Medical Center in Cleveland, Glynis J. Laing, PhD, RN, CNAA, disease manager for heart failure, uses 14-point type, lots of white space, and few words in a bullet format.

ACE Inhibitors (Lisinopril)

What they do: ACE inhibitors make it easier for the heart to pump.

Things to remember:

• Be careful when you take the first dose, especially if you are taking a water pill. You may faint or become dizzy.

• Get up slowly to avoid becoming dizzy.

• Keep taking this medicine if you feel well. It will help you keep your blood pressure down.

• If you miss a dose of this medicine, take it as soon as possible. However, if it is almost time for your next dose, skip the missed dose. Do not double doses.

• Do not drive, do dangerous jobs, or drink alcohol if this medicine makes you dizzy or causes you to faint.

What to watch for: Call your doctor if you have: dizziness, skin rash, dry cough.