Self-management is key to asthma treatment program

Patients learn to take control, avoid ED visits

Asthma patients are learning to self-manage their disease, avoid trips to the emergency department (ED), and cut treatment costs through a program sponsored by Northwestern University and the Rehabilitation Institute of Chicago (RIC).

Patients who have been through the Cornelius Crane Asthma Center program report fewer trips to the ED, increased medication compliance, and greater quality of life, says Enid Silverman, RN, MS, CCRN, director of the Crane Asthma Center and the pulmonary department at RIC.

The asthma center opened three years ago at RIC's main hospital. It is financed by a grant to Northwestern Medical School from the Crane Foundation. Patients range from ages 2 through adulthood.

Components of the program include:

· rigorous education to help patients learn to control the disease;

· use of a daily diary page to track symptoms and medication (see copy of diary card, p. 45);

· nurse-coordinated case management teams that determine the best plan for self-control;

· patient support systems that allow patients to talk by telephone to a nurse or a pulmonary fellow 24 hours a day.

"We establish a partnership. We tell them a lot is going to fall on them, but they are not alone. They have someone they can talk to as the symptoms change," Silverman says

Patients entering the program undergo a thorough evaluation by a physician and a nurse during a session that lasts from 90 minutes to two hours.

Patients come back a month later for re-evaluation, then every three to six months for the first year, depending on their disease status. After the first year, patients usually come back only once a year for evaluation.

Between visits, patients may speak to a nurse by telephone five days a week and have access to a pulmonary fellow 24 hours a day. "We find that no matter how much we give patients in education, patients can absorb only so much. Often, they call the next day, and we go over their medication plan and answer questions over the phone," Silverman says.

The Crane program emphasizes that asthma is a chronic disease and even if patients have no symptoms, they still need to manage their condition, Silverman says. In the past, asthma management, particularly in the pediatric population, has meant crisis management.

"When people aren't having overt symptoms, they tend to undertreat it. They treat asthma as if it were a bacterial infection and stop using their medication when they feel good," she says.

Overcoming fear of daily medicating

One of the biggest hurdles to treating pediatric patients is parents' fear of giving their children medication every day, says Christine Sychlinski, RN, pediatric program coordinator at Crane. Many parents don't understand that the inhaled steroids the children take for asthma are not the same substances that some weightlifters and bodybuilders take, she says. That's why staff spend a lot of time teaching the young patients and their parents about the disease and its treatments.

"We need the whole family to buy into the concept that daily medication and preventing exacerbation are the best ways to treat the disease, says Sychlinski. She has found that children as young as seven can be responsible for their own medication, but they must rely on their parents to get it for them.

The aim of the program is to get asthma patients to buy into the fact that they have a chronic disease and not an episodic condition. "We once thought that when the symptoms were relieved, that was the end of the story. We now realize that patients who have asthma have asthma even when they don't have symptoms," Silverman says.

When patients begin the Crane program, they receive an education booklet, which the staff discuss with them page by page. If patients have anything other than the mildest asthma, they take home a peak flow monitor and are asked to keep daily diary cards for two to three weeks. The diary card has space for both objective and subjective information, Silverman says.

For instance, patients are asked to keep records of their peak flow monitor readings and their symptoms. They write down how many puffs of reliever medicine they are using.

While children are likely to comply with their medication, they don't always do so well at filling out the daily diary cards or monitoring their peak flow monitoring, Sychlinski says. "It's almost impossible to persuade an adolescent to get up earlier to do peak flow monitoring. We'd prefer the morning measurement, but sometimes we have to settle for an evening one," she says.

"This is really important because most patients have no concept of how often they are using the reliever medication unless they write it down," Silverman says.

Diary used to track symptoms

Patients may fax in their diary cards or bring them back in after a month. After the patient keeps the diary for a month, the staff at the Crane Center are able to develop an individually tailored management plan.

"There's no point in trying to develop a plan until you gather data. There's no point in just giving somebody medication, unless you can track how it affects their symptoms," Silverman points out.

Silverman emphasizes that patients don't have to keep the diary cards or do peak flow monitoring forever. But in the early stages of developing a treatment plan, the peak flow monitor is a valuable tool that gives patients something objective to measure. Patients can call in and give the staff objective data rather than saying they are coughing more or don't feel so well, she adds.

The diary also helps patients track when their symptoms occur and what they are doing. If patients realize what triggers their symptoms, they can take steps that change the environment and subsequently are able to cut down on their medication.

For instance, if the symptoms occur only on the weekend, the trigger may be the family cat or the heating system. "Some people think they are always having symptoms. It isn't until they keep a diary card that they realize that they are not," Silverman says.

The Crane staff encourages patients to work with their employers or schools so they can avoid whatever triggers their asthma symptoms.

"Asthma is the No. 1 reason why people miss work and school. If you can get buy-in from the school and the workplace to lessen the triggers, it can eliminate the huge number of lost days related strictly to asthma," Silverman says.