What's been done and what can be done better
March 8, 2014
In 2010, reports about COPD awareness were of an ascending, thumbs-up variety. The public was starting to grasp what those four letters stood for -- chronic obstructive pulmonary disease -- particularly in light of their notoriety as the new number three killer in the U.S., behind heart disease and cancer. COPD had displaced stroke, and in a fell swoop demanded universal attention.
But how quickly human beings become complacent. By 2012, the NIH reported that awareness levels had receded and were back to those of 2008. "Sixty-five percent of adults reported that they have heard of COPD, compared to 71 percent in 2011. Among people most at risk for COPD, awareness stood at 74 percent for current smokers and 73 percent for former smokers; in 2011 these values were 78 percent and 76 percent, respectively," according to the report.
Where Are the Orange Ribbons?
November is COPD month, but we aren't likely to see orange (COPD's "color") ribbons flying from lapels, or orange baseball caps or orange banners or orange-tinted milkshakes to rival October's flood of breast-cancer-month's ubiquitous pink, lamented David Mannino, MD, COPD Foundation board member and a professor in the department of preventive medicine and environmental health at the University of Kentucky College of Public Health. "Yet COPD kills more women than breast cancer annually. Absolutely. It's time to pin on an orange ribbon for a change."
While dipping awareness stats do not necessarily indicate a negative trend, James Kiley, PhD, head of the Division of Lung Disease at National Heart, Lung, and Blood Institute (NHLBI), said that ramped-up efforts are under way to make sure that COPD awareness becomes a public health priority. "If we can't deliver the vital messages to healthcare providers, payers, stakeholders, patients and their families, then we will not be able to identify the large number of individuals who have COPD and don't even know they have it," said Kiley. "We estimate there are 24 million Americans living with COPD and about half of those remain undiagnosed."
The lack of diagnoses can be attributed in part to public misconceptions about the disease - for example, that it only strikes smokers. "When you look at the numbers, about 15 to 20% of people with COPD have never smoked, never lit up a cigarette, based on national data," said Mannino. Still others who quit smoking years ago still contend with an aftermath of lung damage. In addition, there are also some patients - with alpha-1 antitrypsin deficiency-- who experience a genetic version of COPD.
Do Providers Screen Adequately?
And while it is largely lack of public awareness that is so difficult to overcome, some of the problem surrounding COPD also lies with healthcare providers who just don't probe enough when respiratory symptoms are evident. Important education should take place in the primary care office, said Mannino, who is currently working on a project determine which patients should be routinely screened. He personally would recommend that primary providers measure lung function on patients who have respiratory symptoms or who have a respiratory diagnosis. "Yet it is rather infrequently done," he noted.
Recent survey data has shown that patients feel clinicians fail to have meaningful conversations with them about the early symptoms of COPD, said Kiley, noting that conversely, care providers suggest that patients do not fully report their symptoms. Sometimes patients think they are just getting older, or are coming down with a cold, or are similarly "under the weather," and they just neglect to self-report.
"So on both sides of the coin, we see that there is a communication gap," said Kiley. And that gap, he noted, leads to untreated disease that progresses over time, putting a burden on a patient's health, productivity and quality of life, as well as stressing the healthcare system with increased hospitalizations, ED visits and exacerbation-induced ICU stays.
A Campaign Gathers Strength
When the NHLBI's Learn More, Breathe Better campaign was rolled out in 2007, the level of public awareness was quite low. There had been no surveys, no evidence of where we were in terms of public understanding," Kiley explained. "So we started to collect data and develop a COPD baseline. We got a huge boost when we partnered with the CDC and they prominently included COPD in their annual Behavioral Risk Factor Surveillance System (BRFSS). The information gathered has been incredibly enlightening. We absolutely learned that two-thirds of the people diagnosed with COPD report that the disease has negatively impacted their lives. We positively know this disease is debilitating, chronic and impacts quality of life. We have seen data hold up over the last four years, keeping COPD in the number three position of leading causes of death in the US. We know it is a major killer of patients in this country."
Yet beyond these pillars of recognition, the data has also revealed more subtle insights pertaining to awareness. "We have learned that there are hot spots of COPD," said Kiley, listing Kentucky, Alabama, Tennessee, Oklahoma and West Virginia as states where prevalence is as high as 8 or 9 % (compared to 4% in Utah, Washington and Minnesota). In those states there are also population belts of less-educated individuals for whom prior COPD messaging may have been ineffective. "We are asking ourselves if our messages are being delivered at the right level for specific people. If not, perhaps we have to redesign those messages."
Some of that prospective redesign may best be accomplished with the help of state and local coalitions and task forces around the country. "When we started trying to integrate campaign resources with local outreach efforts, we started with organizations in 16 states. Today our Breathe Better Network has grown to 80 organizations across all 50 states. That has been one of our big successes," said Kiley. "With that network in place we want to drill deeper and to be sure providers, patients and the community at large really understand the importance of the information we are trying to deliver."
A Message for Providers
Asked what a healthcare provider might do to assist in the process of educating patients and the public about COPD, Kiley and Mannino offered the following suggestions:
Perhaps the most important COPD messages are the ones directed at healthcare providers, who can effect change in the lives of their patients. "A combination of screening, simple-yet-good diagnostic tools and taking appropriate steps toward providing treatment options will lead to positive outcomes," said Kiley. Mannino similarly offered, "Ultimately we want to get better answers for our patients and be sure they are appropriately treated. But first and foremost, be sure they are treated."
- Use simple questionnaires to open a conversation, then delve deeper. (Kiley said the NHLBI is currently developing just such a tool for clinicians.)
- Order or conduct spirometry for those who are at risk. "It's getting easier and simpler to do right in the office, and we hope that clinicians will take that on," said Kiley.
- Direct patients to pulse oximetry. "Today you can go to a drugstore or department store and purchase a pulse ox for $40," said Mannino. "I have some patients who wear one all the time - happily. I suspect that before long individuals will also be able to do peak flow measurements in similar ways that they can take blood pressure measurements. Educating patients about these measurements can be empowering to patients, allowing them to take some control over their health."
- Providers must make themselves aware of the new agents and new interventions that can help patients' symptoms and quality of life, and inform patients of these emerging possibilities, said Kiley.
Valerie Neff Newitt is on staff at ADVANCE. Contact: firstname.lastname@example.org