Everyone’s dropping the ball on asthma management
Fingers pointed at managed care, physicians, and patients
"Shocking!" "Disturbing!" Sounds like the hype from the supermarket tabloid headlines? Actually, it’s the reaction from doctors and patient educators left breathless by two recent asthma surveys that show patients don’t know much about their disease, they are not managing their asthma well, and their doctors are doing a dismal job of helping them.
The two surveys are Asthma in America, commissioned by Glaxo Pharmaceuticals which included 2,509 asthma patients, 512 doctors and 1,000 members of the general public; and the Asthma Survey by the American Lung Association, which surveyed 781 asthma patients aged 16 and older, and 536 parents of children with asthma.
The bottom line of each: asthma is not being controlled as well as it should be.
And experts are mostly pointing their fingers at harried primary care physicians driven by the juggernaut of managed care with little or no time to educate their patients.
Standards of care for asthma fall far short of the guidelines established by the National Heart, Lung and Blood Institute (NHLBI) in Bethesda, MD, according to the Asthma in America survey.
• The national goal: Patients should maintain normal activity levels. The survey: 48% say asthma limits their ability to take part in sports and recreation; 36% say it limits their normal physical exertion; and 25% say it interferes with their social activities.
• The national goal: Asthma symptoms should not disrupt sleep. The survey: Almost one in three asthma patients (30%) is awakened with breathing problems at least once a week.
• The national goal: no missed school or work because of asthma. The survey: 49% of children and 25% of adults with asthma missed school or work due to the disease in the past year.
More surprisingly, the Asthma in America survey showed that only 9% of all patients could name asthma’s underlying cause (inflammation).
Out of control
The ALA survey shows disease management is out of control; and while 15 million Americans have asthma, 84% of patients and 78% of parents say it has had a negative impact on their lives.
While asthma is a major public health concern, both surveys show patients feel helpless in the face of the disease.
"Physicians are not performing any of the four components of the guidelines at anything like the level they should be," says Harold Nelson, senior staff physician in the Department of Medicine at the National Jewish Medical and Research Center in Denver.
He elaborates: "I think physicians are deficient in terms of using objective measurements (spirometry). I think physicians are under-performing in exploring the factors that make asthma worse. I think they are derelict in education, providing peak flow meters and instructing people how to use them. And finally, I think physicians are derelict in prescribing inhaled steroids where they are appropriate."
While Nelson’s colleagues may be less harsh, they are united in the solution: education. This means more education for doctors, nurses, pharmacists and other health care practitioners, but primarily for patients.
Take more responsibility
In addition, some experts call on patients to take more responsibility for managing their disease and for doctors to make patients part of their own disease management team.
"People are not taking it as seriously as they should, and they don’t need to lower their expectations in terms of standards of living," says Robert Mellins, MD, professor of pediatrics at Columbia-Presbyterian Medical Center in New York City.
"I think the answer is reasonably clear that most people with asthma should be able to live normal lives," Mellins says. "Before one settles for less, one needs to be sure one is making use of all the information that is currently available."
He points out that while "it could be the fault of the health care professional, but people often don’t seek help until too late. The mindset of the public has to be changed."
Many experts note that patients are inclined to focus on the "quick fix" to relieve acute attacks and stop the long-term anti-inflammatory therapy as soon as they feel better, creating a downward spiralling disease cycle.
The NHLBI "applauds" the Asthma in America study for its "extensive" contribution to what has already been known about asthma. "This information confirms we certainly still have a lot of work to do," says Rob Fullwood, MSPH, coordinator of the National Asthma Education and Prevention Program at the NHLBI.
"This survey has just raised the national agen-da, and the needs for different organizations to come together to get our physicians and health care professionals all to really embrace those recommendations more fully," Fullwood says.
The NHLBI has streamlined guidelines for primary care physicians, who treat the vast majority of asthma patients in the United States, to make adherence easier since the full document weighs five pounds, Fullwood says.
NHLBI has also began what Fullwood calls a "very aggressive program" on the local level that includes physicians visiting primary care physicians to train them in their own offices.
Others advocate direct patient education. Nelson says, "I think maybe it is time to go to the patient, tell the patient that this is what they ought to get if they have asthma, and if they don’t get it from their primary care providers, they should have access to a specialist."
The NHLBI is even taking a more adversarial stance in terms of patients’ rights.
"The dissemination is over with," Fullwood says. "We’re finished sending out the guidelines. We’re going straight to the community. The guidelines really mean something and we want them to take it seriously."
It is time to prepare patients to ask the right questions and to press doctors to respond in language they can understand, Fullwood says. "They have a right to do that."
Bob Milo, MD, incoming president of the American College of Allergy, Asthma and Immunology, practicing in Lynchburg, VA, takes a somewhat conciliatory approach to primary care physicians, especially those burdened with the "rat race" created by managed care.
Milo and Nelson, as specialists in daily practice, say they spend a minimum of one hour with a newly diagnosed patient; but they recognize that primary care physicians may find their jobs in jeopardy if they spend that much time with a single patient.
While some managed care companies, especially the larger closed ones like Kaiser, are recognizing the value of early and full treatment to avoid costly emergency care and hospitalization, Fullwood says."Many don’t realize yet you have to spend a little money to save a lot."
The national specialty societies must come up with a way to help primary care doctors, Milo contends. "We need to have care teams and help our colleagues in primary care who are catching the brunt of this."
Educational videos and literature coupled with quality time with the physicians can help, but Milo’s organization is also exploring the possibility of certifying asthma educators to help patients learn to help themselves.
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