More to know about COPD: Disputing the myths about an underdiagnosed disease

This condition is often missed or misunderstood. Experts urge more awareness and newer diagnostic tools.

By Kathleen Phalen Tomaselli amednews correspondent — Posted Jan. 7, 2008

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It's a slow and surreptitious process within the lung tissue. At first, few patients notice the subtle changes -- the shallow, uneven breathing; the trapped air; the uncomfortable suffocation. Even when they do, they rationalize: "I'm getting older," they say, or "I need to lose some weight."

Without intervention, the devastation continues -- sometimes a result of cigarette smoke or inhaled toxins, sometimes for no known reason. Over time, the alveoli appear almost moth-eaten, unable to do their jobs. The silhouette of the heart shrinks because of hyperinflated lungs, the diaphragm flattens and the bronchi become floppy and narrow. Other symptoms -- the chronic cough, the mucus, the shortness of breath, the difficulty blowing air out, the inability to do physical activities -- become more pronounced.

Often, more than half of lung functioning is lost before a diagnosis of chronic obstructive pulmonary disease is made. Partly because the condition's patient profile has changed -- it's no longer considered a disease of old men -- and partly because it is fraught with other misconceptions, COPD remains overlooked, even though it is the fourth leading U.S. cause of death.

More than 12 million people are diagnosed with COPD, but at least 12 million more unknowingly have it. "It's absolutely not on anybody's front burner," says Barbara Yawn, MD, a family physician who directs research at Olmstead Medical Center in Rochester, Minn. She also co-chairs the U.S. COPD Coalition, a nonprofit network of organizations dedicated to public education and research. "The primary care physician is focusing on two or three other chronic conditions, and they don't get around to questions of COPD."

Thus, the National Institutes of Health's National Heart, Lung and Blood Institute launched in early 2007 the Learn More, Breathe Better Campaign in an attempt to raise awareness and communicate a key message of early detection. "We are updating attitudes and concepts. We now have more tools to diagnose and treat," says James P. Kiley, PhD, director of the NHLBI's division of lung diseases. "The awareness program is a wake-up call. This disease is on the rise, and we need to get our hands on it. There is a role for primary care physicians, and spirometry is key."

Nonetheless, as Dr. Yawn explains, doctors still ask why they should test for a disease they can't help. "Our first job is to let doctors know this is not hopeless, and if we diagnose earlier we can help patients return to work and to normal activities," she says. "We need to show this is worth identifying. Treating this condition can give doctors, patients and families the same satisfaction and hope that treating other chronic diseases can, especially if we find it earlier when treatments make more difference."

MYTH: Spirometry is cumbersome

"We found that almost 40% of COPD is missed by primary care physicians," says Frederic D. Seifer, MD, clinical associate professor at East Tennessee University Quillen College of Medicine and director of the Erlanger Center for Better Health in Chattanooga. "How can you help these patients without identifying them?"

Two of the biggest reasons COPD gets missed in the primary care setting, Dr. Seifer says, are that most physicians believe it can be diagnosed clinically without spirometry and that it primarily affects men older than 65. "Wrong sex and wrong age," he says, adding that spirometry is essential.

But primary care doctors often recall the expensive, cumbersome, hard-to-calibrate equipment of their medical school days. As a result, barely 20% of their offices have spirometers. "Of 20,000 newly diagnosed COPD patients," says Aaron Milstone, MD, the director of the lung transplant program at Vanderbilt University in Nashville, Tenn., "less than 2% had testing."

Today, spirometers cost less than $1,000. They're small, about the size of a smart phone; they are easy to use; and they are reimbursable. "It's much easier than an EKG," says Stephen Rennard, MD, professor of internal medicine at the University of Nebraska Medical Center in Omaha. "It's like measuring blood pressure."

These newer machines generate a computer report, and Dr. Seifer has been teaching local physicians how to interpret the results. "Physicians are intelligent, and they want to be able to read the reports," he says. "They are less likely to use it if they can't read it."

Additionally, the COPD Foundation sponsors a mobile spirometry unit. "Since Jan. 14, [2007], we've been in 21 cities and tested almost 10,152 [people]" says John Walsh, founder and president, who himself has the alpha-1 form of COPD.

MYTH: Alpha-1 COPD is untreatable

Since she was a child, Melissa Biggs was chronically ill with colds, sore throats and upper respiratory conditions. But it wasn't until the 34-year-old former "Bay Watch" actress had her second bout of pneumonia that she went to an allergy specialist for help.

"She drew nine vials of blood, did scratch tests," Biggs says. "She said I was severely allergic and diagnosed me as a stoic asthmatic." Weeks later, after further testing, the allergist diagnosed Biggs with an alpha-1 antitrypsin deficiency, the only known genetic cause of COPD.

Biggs was referred to a critical care specialist. "He said, 'I don't know much, but what I do know [is that] it is rare and it is fatal. I give you two years.'" Biggs, a single mother, says she went into a depression, but she also found out more. "I learned that my doctor was grossly misinformed. It's treatable and it's not rare. It's rarely diagnosed."

The average alpha-1 deficient patient has symptoms for 7.2 years and sees three different doctors before getting a correct diagnosis, says D. Kyle Hogarth, MD, assistant professor of medicine at the University of Chicago Medical Center. He also directs its Alpha-1 Antitrypsin Deficiency Clinical Resource Center.

Alpha-1 antitrypsin is an anti-inflammatory protein that shields the lung's delicate tissues by binding to neutrophil elastase -- a normal lung enzyme that digests bacteria and other foreign substances. Without alpha-1, this digestion goes unchecked, eventually damaging healthy lung tissue. According to a study by the Respiratory & Allergic Disease Foundation, alpha-1 is estimated to affect up to 100,000 Americans, but nearly 95% are undiagnosed or misdiagnosed.

Knowing whom to screen appears to be one of the missing links.

"Our surveillance study found that physicians cannot depend on typical patient profiles to assess whether AAT deficiency screening is necessary," says Dr. Hogarth, the lead author of a study presented at the annual meeting of the American College of Chest Physicians in October 2007. A number of patients who normally would not be screened based on suggested guidelines turned out to be positive for AAT deficiency. "In the real-world setting, this suggests that thousands of patients who have been diagnosed with COPD or severe asthma may actually have alpha-1."

Study findings suggest that all patients with moderate or severe persistent asthma and/or COPD should be tested for AAT deficiency, says Gary Rachelefsky, MD, one of the investigators and a professor of allergy and immunology and director of the Executive Care Center for Asthma, Allergy and Respiratory Diseases at California's UCLA School of Medicine. "It is imperative that clinicians become more vigilant about alpha-1 testing."

MYTH: It's a hopeless condition

It's the "pumpkin pie" talk that helps his COPD patients grasp what they are facing, Dr. Seifer explains.

He draws a circle on the back of the patient's spirometry reading. If the patient has lost one-third of his or her lung function, that's a one-third sized slice of the pie. "This much of your pie is gone. You'll never get it back," he tells them. "We're going to help you quit smoking, because you can't take any more bites out of this pie. For the first time they say they understand their disease."

Understanding is an important part of the treatment equation, as is pulmonary rehabilitation, nutrition and exercise. "This improves quality of life," Nebraska's Dr. Rennard says.

Long-acting bronchodilators and inhaled corticosteroids added to bronchodilators are helping and, in some cases, slowing progression, he said. In the TORCH (TOward a Revolution in COPD Health) study, presented at the American Thoracic Society meeting in May, patients treated with salmeterol/fluticasone propionate had a slower rate of lung function decline over three years compared with patients receiving a placebo. In addition, advances in smoking cessation give primary care physicians new tools.

A previous therapy -- lung volume reduction surgery, originally used in the 1950s -- has re-emerged for patients with upper lobe damage. Surgeons remove the most damaged portion, hoping to restore lung elasticity. And it seems a small umbrella might hold an answer for some patients. Known as the IBV Valve System, these one-way devices are placed inside the lung's upper lobe to redirect airflow to healthier portions of the lung.

"This is just the tip of the iceberg," Dr. Milstone says.

The Global Initiative for Chronic Obstructive Lung Disease, an initiative of NHLBI and the World Health Organization, has developed evidence-based guidelines for COPD management and staging criteria from spirometry. Yet, on average, physicians estimate that only 12% of their patients have COPD. And although 55% of doctors are aware of major COPD guidelines, only 25% use them to guide decision-making.

"We are in a Columbus-like era for the treatment of COPD. We are going forward with great impact," Dr. Milstone says. "We now need to focus on primary care physicians and internists, to let our colleagues know the future is really quite bright, that we have great optimism."

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COPD questions

Experts suggest asking the following to identify patients for spirometry:

  • Do you cough several times, most days?
  • Do you bring up phlegm or mucus most days?
  • Do you get out of breath more easily than others your age?
  • Are you older than 40?
  • Are you a current or former smoker?

Source: COPD Foundation

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Spirometric classifications

Stage I, mild COPD Characterized by mild airflow limitation (FEV1/FVC, 0.70, FEV1 more than 80% predicted). Symptoms of chronic cough and sputum production may be present, but not always. Patient may not be aware that lung function is abnormal.

Stage II, moderate COPD Characterized by worsening airflow limitation (FEV1/FVC, 0.70, 50% less than FEV1, 80% predicted), with shortness of breath typically on exertion; cough and sputum production sometimes present. Patients typically seek medical attention.

Stage III, severe COPD Characterized by further worsening of airflow limitation (FEV1/FVC, 0.70, 30% less than FEV1 , 50% predicted), greater shortness of breath, reduced exercise capacity, fatigue and repeated exacerbations that almost always have an impact on patients' quality of life.

Source: GOLD Report, "Global Strategy for the Diagnosis, Management, and Prevention of Chronic Obstructive Pulmonary Disease," 2007

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The toll of COPD on the family: One caregiver's story

Ed Brailey was winded each time he hoisted laundry up two flights of steps at his East Lyme, Conn., condominium. It didn't seem right, says his wife, Jo Anne Brailey, who was 51 at the time. Ed was only 40. A visit to the doctor explained his difficulty: He had alpha-1 COPD.

From that point on, it was important to the couple that they both go to his doctor appointments. "I wanted to ask my own questions," she says.

In time, their household roles reversed. She took on physical tasks such as taking out trash, doing yard work and pushing Ed's wheelchair. He started doing more sedentary things, such as paying the bills. "You have to give them something to do, to keep as active as possible," she says.

By 2002, a decade after diagnosis, only 13% of Ed Brailey's lung function remained. He couldn't eat or breathe. He even stopped wearing socks because it was too hard to pull them up.

Meanwhile, Jo Anne Brailey found herself worrying, wondering how she would manage to care for him and how they would handle finances. "At night I'd reach over and see if he was breathing. Sometimes I'd take a drive alone and scream. Caregiving is very emotional."

Five years ago, Ed Brailey had a lung transplant and is doing well. He has to be careful, because any infection could be life-threatening. Still, the Braileys are finding their way. He gets online and chats with other survivors, and she volunteers for the COPD Foundation's Caregiver Hotline. "We simply give support, answer questions about caregiver worries."

The toll-free number for the COPD Foundation Caregiver hotline, which is operational between 9 a.m. and 9 p.m. EST, is 866-316-COPD (866-316-2673).

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External links

Guidelines and other resources from GOLD's "Global Strategy for the Diagnosis, Management and Prevention of Chronic Obstructive Pulmonary Disease" (link) ?

"Learn More, Breathe Better" campaign materials for physicians from the National Heart, Lung and Blood Institute (link)

COPD Foundation pocket consultant card and other resources for medical professionals (link)

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