Self-management is key to asthma treatment program

Patients learn to take control, avoid ED visits

(Editor’s note: Disease management programs could be a good addition to your rehab program, particularly if your are aligned with a health system that has capitated contracts. These programs help keep overall health care costs down and are popular with capitated providers and managed care organizations. An asthma management program in your pulmonary rehab department could be a good niche market for your facility.)

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

Although hard data are not available, patients who have been through the Crane Clinic program report fewer trips to the emergency department, increased medication compliance, and greater quality of life, says Enid Silverman, RN, MS, CCRN, director of the Cornelius Crane Asthma Center and the pulmonary department at RIC.

"We don’t have a cure for asthma, but we can help [patients] manage it themselves by giving them the right tools," she explains.

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 two 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;

• nurse-coordinated case management teams which determine the best plan for self-control;

• patient support systems which allow patients to talk by telephone to a nurse or a pulmonary fellow 24-hours a day.

"We establish a partnership," Silverman says. "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."

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 to be re-evaluated, 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.

Asthma is a family-centered disease which affects even the siblings of pediatric patients, says Christine Szychlinski, RN, pediatric program coordinator.

"We need the whole family to buy into the concept that daily medication and preventing exacerbation are the best way to treat the disease," she adds.

In 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," Silverman says. "Often, they call the next day, and we go over their medication plan and answer questions over the phone."

A chronic disease

The Crane program emphasizes the fact that asthma is a chronic disease and that 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, Silverman says.

"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.

When patients begin the Crane program, they receive an education booklet, which the staff discusses 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 (see sample card, p. 86) 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.

"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.

Tracking symptoms

Patients may fax in their diary cards or bring them back after a month.

After the patient keeps the diary for a month, the staff at the Crane Center is 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 explains.

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.

They can call in and give the staff objective data rather than saying they are coughing more or don’t feel so well, she says.

The diary also helps patients track when their symptoms occur and what they are doing when it happens. If patients realize what triggers their symptoms, they can take steps the change the environment and subsequently 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," Silverman says. "It isn’t until they keep a diary card that they realize that they are not."

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," Silverman says. "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 tells of one patient, a labor and delivery room nurse, who discovered her symptoms were triggered when the area was being disinfected. She worked with her employer and arranged to be in another part of the hospital during that time.

Silverman has found that an upper respiratory infection is the number one cause of adult asthma attacks. The staff at Crane work with their patients to develop an action plan for when this happens.

Szychlinski 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.

Her experience shows that it is easy to get children to comply with their medications when they understand that using the inhaler at home "will help them avoid looking like a geek in gym."

When dealing with young patients, Szychlinski finds it most effective to zero in on "what’s in it for them." Kids often can be persuaded to use their medication if they know it will enable them to go on a class trip or to be able to participate in a sport or other activity, she says.

While children are likely to comply with their medication, they don’t always do so well at filling out the daily diary cards or conducting peak flow monitoring, Szychlinski says.

"It’s almost impossible to persuade an adolescent to get up earlier to do peak flow monitoring," she explains. "We’d prefer the morning measurement but sometimes we have to settle for an evening one."

If patients understand their medications and how and when they should be used, they often are able to avoid reaching asthma’s crisis stage and taking a trip to the hospital.

First, they are encouraged to use their controller medication more often. If that doesn’t work, they can switch to something stronger.

Many patients start the program at Crane on megadoses of steroids. One of the goals of the program is to wean them off steroids, which can cause side effects.

The Crane staff encourages patients to reserve steroids for exacerbations, as opposed to using them regularly to relieve their symptoms.

The program also discourages trips to the emergency department. "Although we know there is a place for the hospital, there is nothing magic in an emergency { department,]" Silverman says. "They are going to treat the patients with the same drugs people can treat themselves with at home if they use them effectively."

Silverman has seen significant increases in medication compliance by patients who have gone through the Crane program.

"Most of the patients that come to us have been on the same medications we prescribe, but no one has explained to them how to use them properly," she says. For instance, most patients have no idea that it takes from five to seven days for inhaled steroids to work, she adds.

"What we do isn’t magic, but physician practices don’t have an hour or more of time to educate people," Silverman says.

One of the biggest hurdles to treating pediatric patients is parents’ fear of giving their children medication every day. Many parents don’t understand that the inhaled steroids the children take for asthma are not the same thing that weightlifters take, Szychlinski says.

That’s why staff spend a lot of time teaching the young patients and their parents about the disease and its treatments.

Crane’s education component also often empowers parents to ask better questions and become more involved with their child’s treatment at the pediatrician’s office, Szychlinski says.

Since most children are treated by large group practices, a sick child sometimes may be seen by a physician who is not familiar with his or her background, she says.

"Parents no longer passively accept orders," she says. "They talk to the physicians, ask questions, and give them information."

Crane says the clinic has been unable to get financial outcome data or emergency department admissions studies from payers to determine the program’s effectiveness. But, she says she has anecdotal information from patients that show that emergency department visits have dropped and quality of life has improved after patients have begun the program.

She says that after a year or so in the program, patients make fewer calls to the clinic. She explains that it takes about a year for patients to understand what their dosage will be and how their asthma will be affected by the change in season.

"In a year, they know themselves," Silverman says. "They start understanding how to go up and down with therapy depending on what is going on."

[For more information on RIC’s asthma program, call the Cornelius Crane Asthma Center at (312) 908-4501.]