Despite new treatments for asthma, the death rate from this disease nearly doubled among 5- to 24-year-olds in the United States between 1980 and 1993. Although there are no clear explanations, Robert C. Strunk, M.D., a professor of pediatrics at Washington University School of Medicine in St. Louis, says the vast majority of those deaths could have been prevented by appropriate care and planning. Strunk also has identified children who are most likely to die. These children live in families that, for various reasons, do not function or communicate well. "It's pretty clear that the parents don't pay attention when their child has bad asthma. Conflict or disorder in the family prevents good care or enhances the possibility of recognizing things late. Children just get trapped," Strunk said.
These families do not have one particular kind of problem. They may be struggling with the recent loss of a loved one, alcoholism, unemployment, spousal abuse or other issues, added Strunk, who suffers from asthma. Looking at published studies, he compared children who had died with children who had asthma just as severely but were still alive. His review of the studies appeared in a recent issue of the journal Immunology and Allergy Clinics of North America.
Asthma is a chronic disease caused by inflammation and swelling of the small airways in the lungs. When the airways become swollen and congested with mucus, muscle spasms around the airways block the normal flow of air, causing patients to cough and wheeze and have difficulty breathing.
Asthma deaths fall into two types. In the most common type, patients arrive late for care after a period of symptoms in which life-saving treatment could have been started. Looking at the patients' medical records reveals that, in the past, these patients disregarded their symptoms or had difficulty accepting their disease, Strunk said. They usually experienced severe symptoms that increased over several hours and often many days prior to their collapse.
In the other type, deaths are sudden and unexpected. These patients do not have symptoms of severe asthma before the onset of the fatal attack.
Most of the studies Strunk reviewed indicated that a large proportion of patients who die have severe asthma. But the number of patients with severe disease is large, Strunk said, and only 1 percent to 3 percent of them die over follow-up periods of 5 to 10 years.
As a result, identifying patients at risk of death takes on great importance. In his review, Strunk compiled the following list of risk factors: patients with poor family support for ongoing and acute care, patients who have had any near-fatal attacks, patients who recently have been hospitalized for asthma treatment in spite of optimally prescribed therapy, patients in denial, patients with poor perception of airway obstruction, and patients who have problems accessing immediate medical care.
Strunk and his colleagues in the Pediatric Division of Allergy and Pulmonary Medicine also keep a list of fatality-prone children. They follow these patients extra closely, see them frequently and test pulmonary function on a regular basis. "The bottom line in deciding who is fatality-prone is really doctors' and nurses' gut feeling about a family," he said. "Everyone knows there's a list and, if those patients call, the secretaries pay special attention and get someone right away."
Aside from having severe asthma, children's attitudes about the disease can determine whether they will die from the disease. Many of these children are depressed and sad about having the disease, disliking how their lives are interrupted by asthma.
"Children with asthma learn how to think about the disease from their parents. I think the family issues are paramount," Strunk said. He sees children in the asthma clinic with severe disease whose families are organized and work well together. The children may not be participating in active sports because their asthma is so severe, but they are happy, going to school every day and looking forward to life.
He also sees children with asthma that's not as severe but is completely out of control. These patients are in and out of the hospital, and they're not focusing on taking care of their asthma.
Strunk said figuring out all of the reasons why such families don't allow medical care to happen is essential. "Each reason requires its own set of interventions," he said. "If children are depressed, maybe they need to go to a psychologist. If families are disorganized, maybe they need a social worker and family therapy. If there are all kinds of barriers in the way, we need to find out how to get through some of those."
Recognition and Education
Three basic steps can prevent asthma deaths in children, Strunk said in his review. First, educate both patient and family about the disease and its serious consequences. Second, establish a medical regimen to control the asthma. Third, determine whether a child is at high risk of dying.
Even if a child is adhering to a medical regimen and is improving, physicians and nurses must stress chronic care because asthma may come and go but rarely disappears. Therefore, families should be counseled about the importance of contacting a physician and promptly treating symptoms.
The effectiveness of asthma therapy must be checked regularly by both pulmonary function testing and making sure the treatment allows participation in school activities and minimizes school absences.
Patients who are at high risk of dying should be followed more closely, Strunk said. They should have pulmonary function tests at each physician visit and a peak flow meter at home for regular use. The child's parents should know the seriousness of the illness, and an asthma action or crisis plan should be developed for acute attacks.
"In spite of better understanding and newer treatments, deaths continue to occur," Strunk said. "These families have to pay attention, get organized and learn to communicate with each other."
Note: For more information, refer to Strunk RC, "The Fatality-prone Asthmatic Child and Adolescent," Immunology and Allergy Clinics of North America, 18, 85-97, February 1998.
The above story is based on materials provided by Washington University In St. Louis. Note: Materials may be edited for content and length.
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