Chronic obstructive pulmonary disease (COPD) affects approximately 24 million Americans and is one of the leading causes of hospitalization in this country. Last month, the COPD Foundation released the results of their COPE (Chronic Obstructive Pulmonary Experience) Survey, which examined both patients' and doctors' experiences with managing the disease. The survey's results indicate that, despite the prevalence of the disease, the majority of COPD patients know very little about their condition, even though nearly all physicians surveyed reported discussing fundamentals of the condition with their patients.
It is true that diagnosing and managing COPD can be tricky. Despite often being confused with asthma, COPD is distinctly different in that it cannot be reversed. The condition is characterized by airway, lung and blood vessel inflammation, as well as decreased airflow that worsens over time. Receiving an early diagnosis is vitally important to avoid unnecessary damage. Former and current smokers are especially at risk and should be made aware of COPD and the associated symptoms.
According to the COPE Survey results, it took COPD patients an average of two years and nine months of experiencing symptoms before getting a diagnosis—almost three years of irreversible lung damage that could have potentially been avoided. "The presentation of COPD can be quite variable, with symptoms presenting at a variety of ages and stages of disease," says MeiLan Han, M.D., M.S., Associate Professor of Internal Medicine at the University of Michigan Health System. "Patients may also have a tendency to downplay or not report symptoms, attributing them to smoking or old age."
Constantly evaluating a loved one for new or worsening health problems can be a challenging situation for caregivers, who are already faced with a demanding job.
The amount of latent medical knowledge caregivers must collect and cultivate is astounding, and Dr. Han has some valuable insight regarding COPD to add to your mental inventory. "It is important for caregivers to recognize the signs and symptoms of COPD, like shortness of breath, wheezing, and persistent cough, so that they can speak to their [loved ones'] doctor[s] about having spirometry (a simple lung function test) done," she says. "In addition, caregivers can be essential in helping patients establish an action plan with their doctors and ensuring that one is followed, in the event of a flare-up."
During exacerbations or "flare-ups," symptoms of a patient's COPD worsen significantly, sometimes due to obvious reasons such as air pollution or allergens, and other times when no clear cause can be identified. "The most common causes of COPD exacerbations are infections and environmental triggers," Han notes. "A persistent increase in shortness of breath, cough and sputum (mucus) production are typical symptoms."
If a flare-up is particularly severe, it can result in a serious medical emergency, which is why it is imperative for COPD patients to have an action plan in place. "Timely recognition of the symptoms is important to help the patient's doctor make decisions about treatment strategies," says Scott Cerreta, a registered respiratory therapist and Director of Education at the COPD Foundation. "Depending on their symptoms, patients may be able to manage some exacerbations at home with their current medications by increasing the dose." However, some exacerbations can land patients in the hospital, requiring close observation and more aggressive treatment.
Even if you have agreed upon an action plan with your loved one's physician, there are some symptoms to be aware of that require immediate action. "Early warning signs of a flare-up that should be reported to the doctor right away include: fever, increased use of rescue medications, change in color or amount of mucus, tiredness lasting more than a day or ankle swelling," Cerreta warns. Confusion, severe shortness of breath, chest pain or blue coloration of the lips or fingers are dangerous symptoms that warrant a visit to the emergency room or a call to 911.
Increased knowledge improves quality of life
Many of these exacerbations and harmful symptoms can be avoided altogether through additional education and attentive caregiving.
The COPE Survey explicitly showed that both patients and doctors alike need significant improvement in these areas. A majority (82 percent) of COPD patients surveyed claimed they are satisfied with their treatment, but conversely reported that their condition seriously impacts their ability to complete day-to-day activities such as walking, climbing stairs and exercising. "I think some patients may not know what treatment options are available, which can include not only medications, but also things like pulmonary rehabilitation, supplemental oxygen or even surgical options in severe cases," Dr. Han says. "This emphasizes the importance of establishing good communication between patients and their [medical care] providers to develop individualized treatment plans."
Could simple educational measures really help to improve the quality of life for those suffering from COPD?
"Yes!" Cerreta reassures. "Evidence shows that poorly controlled COPD will cause a rapid loss of lung function toward the end of one's life. This can be avoided. Raising awareness amongst patients [and caregivers] about COPD management is a step in the right direction to prevent flare-ups from occurring and preserve lung function as much as possible. This simple form of education directly impacts patients' quality of life."
Knowing when to take action against aggressive COPD symptoms is the best defense for a loved one's lungs. Cerreta recommends keeping patients physically active and motivated in safeguarding their health. "The best place for patients to learn more about living their life with COPD is by attending a pulmonary rehabilitation program," he suggests. Run by specialists, these programs will safely teach your loved one various techniques for managing their symptoms and exercising.
Communicate with your loved one about the status of their condition, and speak with their doctor to ensure that their COPD action plan is up-to-date, learn about additional treatment options and determine whether they may be a candidate for a rehabilitation program.
Asking can't hurt, but a lack of knowledge certainly can!