NIH survey identifies barriers to effective patient-provider dialogue about COPD

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Lack of communication between patients and health care providers about chronic obstructive pulmonary disease (COPD) remains a major barrier to diagnosis of this disease, according to the results of a Web-based survey released today by the National Heart Lung, and Blood Institute (NHLBI) of the National Institutes of Health. More Americans, particularly smokers, are talking to their doctor or health care provider about the symptoms of COPD, which is an encouraging sign that awareness efforts are taking hold. Patients and providers, though, can still do more.
“A good conversation between patients and providers about COPD can make a real difference for disease sufferers. It’s no secret that early diagnosis and treatment can improve daily living for those who have COPD – but you can’t get there without an open line of dialogue in the exam room,” said James Kiley, Ph.D., director of the NHLBI Division of Lung Diseases. “That’s why patients and providers need to be aware of COPD, its risk factors and symptoms, how it affects daily life and what can be done to help get them back to doing the things they love.” COPD, which in 2010 surpassed stroke to become the third leading cause of death in the United States, is a serious lung disease which over time makes it harder to breathe. It affects an estimated 24 million Americans, but as many as half of those affected remain undiagnosed. This is partially because symptoms of the disease – such as shortness of breath, chronic coughing or wheezing, production of excess sputum, or a feeling of being unable to take a deep breath – come on slowly and worsen over time, leaving many to dismiss their symptoms and delay seeking diagnosis and treatment until the disease is advanced.
The survey found a dramatic increase in the numbers of current smokers, a key COPD risk group, who had discussed their symptoms with their doctors - from 42 percent in 2009 to 67 percent in 2013. Overall, 26 percent of adults who reported experiencing these symptoms stated they had not discussed these symptoms with their doctor or health care provider. Physicians also missed opportunities; 82 percent of current smokers who reported symptoms had a conversation with their doctor about their smoking history, but only 37 percent of former smokers, who are also at risk, reported a similar conversation.
According to the survey, COPD awareness issues contribute to this missed dialogue. For example, three of the top reasons cited by people with COPD symptoms who did not talk to a doctor were “I did not think of it,” “I’ve had these problems for years,” and “these problems will just go way in time.” Also, only 18 percent of symptomatic people who discussed their symptoms heard their provider mention COPD.
“Regardless of positive developments, the challenge remains that more than 1 in 3 Americans do not know what COPD is or how it affects them – and less than half understand that COPD can be treated,” said Kiley. “COPD is the only major chronic disease where deaths are not decreasing. It is critical for people to understand whether they may be at risk and recognize their symptoms as early as possible.”
Kiley said the NHLBI will continue to lead in public education and outreach, primarily through the COPD Learn More Breathe Better campaign. COPD Learn More Breathe Better, the first national awareness campaign on COPD, aims to improve knowledge among those with and at risk for the disease, as well as health care providers – particularly those in a primary care setting. Now in 50 states and the District of Columbia, the Breathe Better Network of state and local organizations will be conducting activities and events throughout November as part of National COPD Awareness Month. The COPD Learn More Breathe Better campaign also has developed tools to facilitate discussions between providers and patients in the exam room.
As part of the NHLBI’s broader effort to bolster the federal dialogue on COPD, the institute also recently hosted a workshop attended by representatives from 22 federal agencies and institutes invested in COPD research and education, to discuss ways to enhance the federal response to this serious public health problem. The attendees shared information about current COPD activities and identified areas where collaboration could improve disease prevention, ascertainment, diagnosis, and treatment. The representatives next aim to meet with external, non-federal stakeholders to discuss ways to respond to the growing COPD burden.
COPD most often occurs in people age 40 and older with a history of smoking. However, as many as 1 in 6 people with COPD have never smoked. COPD also can occur in people with a genetic condition known as alpha-1 antitrypsin deficiency or through long-term exposure to substances that can irritate the lungs, such as dust or fumes.
COPD is diagnosed with a simple test called spirometry, which can be conducted in a doctor’s office. The test involves breathing out as hard and fast as possible into a tube connected to a machine that measures lung function.
The NHLBI analyzed the results of the annual HealthStyles survey of public health attitudes, knowledge, practices, and lifestyle habits among a nationally-representative sample of U.S. adults, conducted each year by Porter Novelli, the communications contractor for the NHLBI’s COPD Learn More Breathe Better campaign. The latest survey was conducted in summer 2013; results represent a sample of 4,703 U.S. adults, and have a margin of error of 1.4 percentage points.
Part of the National Institutes of Health, the National Heart, Lung, and Blood Institute (NHLBI) plans, conducts, and supports research related to the causes, prevention, diagnosis, and treatment of heart, blood vessel, lung, and blood diseases; and sleep disorders. The Institute also administers national health education campaigns on women and heart disease, healthy weight for children, and other topics. NHLBI press releases and other materials are available online at http://www.nhlbi.nih.gov
About the National Institutes of Health (NIH): NIH, the nation's medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.

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