COPD in America: Community Findings Over the Years

It is estimated that more than 250 million people worldwide have COPD and over 65 million of them have moderate to severe cases. In an effort to better understand the effects of this disease, we have fielded our COPD In America survey for the past six years. The 2020 COPD In America survey had over 2,700 participants and a snapshot of their responses can be found below. How do respondents view the severity of their COPD? Like many chronic conditions, the severity of COPD varies greatly from patient to patient. Over half (52%) of patients report needing help with household duties and about ¾ (72%) went on a prescription medication within a month of diagnosis. What are the most commonly reported symptoms? COPD patients experience a wide range of symptoms throughout the body. 45% report feeling anxiety/panic, 41% experience rib cramping, and only 1% of patients report experiencing no symptoms. How many exacerbations/flare-ups have our respondents had in the past year? COPD exacerbations (also known as flare-ups) are a worsening of symptoms caused by different factors. They are an unfortunate reality for most COPD patients but can sometimes be prevented or quelled with proper attention. What about other health conditions? 94% of COPD patients report having at least one other health condition, including 33% with depression and 21% with sleep apnea. The most commonly diagnosed cancer among respondents was skin cancer (14%) and 71% reported never having a cancer diagnosis. What is the employment status of our respondents? COPD can make it very challenging to have a job. Only 15% of respondents report being employed and 48% make less than $30,000 a year. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"] The COPD in America 2020 survey was conducted online from March through July of 2020. 2,704 people completed the survey. More than 2,000 people with COPD participated in our COPD In America survey to share more about life with the condition. Respondents opened up about their diagnosis journey, their relationships with their healthcare providers, treatment experiences and satisfaction, relationships with family and friends, and the daily struggles of living with COPD. In addition to frustrating symptoms, many respondents struggle with support from others and the stigma that they face when it comes to oxygen wear or past smoking habits. The most common COPD symptom A majority (91%) of respondents reported that their COPD is moderate (46%) or severe (45%). For these people, shortness of breath and fatigue were the most common symptoms experienced. It’s no surprise that these symptoms are also the most frustrating. These symptoms interfere with daily activities and occur often even with proper treatment and medications for COPD. Other conditions and comorbidities with COPD In addition to a COPD diagnosis, most (94%) also experience other conditions and comorbidities that bring about a new set of daily challenges. These conditions may occur as a result of COPD, in addition to COPD, or due to similar risk factors that cause COPD like smoking. Support and social life with the condition Although 2/3 of patients have someone involved in their care, there is still a lack of support for many. Over 20% expressed a need for emotional support, help with household duties, and finding coping strategies. Additionally, COPD can be very lonely and over half of the respondents reported that they feel less social because of the condition. Judgement around COPD and oxygen use Oxygen therapy or supplemental oxygen delivers an extra supply of oxygen into the body to help improve symptoms of COPD. It is a common treatment for COPD, yet many are judged and stigmatized by the mere sight of it. Additionally, there are challenges when it comes to running errands, traveling, or attending social events with oxygen. Bracing those challenges contributes to the loneliness and isolation that so many people with COPD may feel. The smoking stigma Smoking is the number one risk factor for COPD, but not everyone who has COPD is a former smoker. For both smokers and non-smokers alike, there is a stigma and blame that comes with a COPD diagnosis. Patients express that outsiders tend to feel they brought COPD onto themselves and even say 'I told you so' to those suffering from this condition. This is not helpful for those with COPD who need support from the closest people in their lives. The COPD in America 2019 survey was conducted online from April through July of 2019. The 2,007 patients who completed the survey have been diagnosed with COPD; chronic obstructive pulmonary disease, emphysema, or chronic bronchitis. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"],61% of respondents indicated in the 2018 In America survey that they want information on coping with COPD flare-ups. Kevin shares information on how he handles and avoids flare-ups from a patient perspective. If nothing else besides being extremely frightening, flare-ups are extremely frustrating (for me anyway). You could be going along, right as rain (well as much as anyone with COPD can be described as “going along”) and wake up one morning and find that, among other elements, your ability to breathe has changed dramatically. But first, maybe we’d better describe what an exacerbation - a flare-up - feels like or looks like coming down the road. Symptoms COPD symptoms are unique to each of us to begin with so, it’s up to us to recognize what’s going on with our bodies - how you feel on a typical day, how your breathing feels, how much you cough. Pay close attention when things feel like they’ve changed or are changing. WebMD suggests being aware of the following:1 Breathing A sudden increase in SOB (shortness of breath), particularly in situations that were previously manageable, oxygen-wise, is a good indication that a flare-up may be on its way. A friend of mine told me he was brushing his teeth - something he never had trouble with despite the COPD - and suddenly felt like he was going to collapse. You feel like you have to use your chest muscles to breathe instead of your diaphragm. Your breathing becomes more uneven than usual and, sometimes, your chest moves a lot faster or, in some cases (see above “unique”) sometimes it’s much slower. Or even at rest, you might find yourself gasping for air. Coughing You may be having a terrific day and suddenly find yourself having to cough much more than you have been and when you do, there’s twice as much phlegm. And then, sometimes you hear odd noises as you breathe. Your breathing begins to make strange noises. Wheezing This suggests mucus or pus is blocking your airways.2 Gurgling could mean fluid in your lungs. Your appearance There might be changes in your skin or nail color. You see a bluish tint around your lips. Your skin looks yellow or gray. Early-morning headaches You start the day with a throbbing head because of a buildup of carbon dioxide in your blood. Unpredictability For me, the hardest part about flare-ups (exacerbations) IMHO, is their unpredictability. They show up when you least expect them. But after a while, when it happens, you’re not so surprised anymore. In my case I get disappointed (I was getting around pretty good there for a while, wasn’t I?) and a little frightened (Is this the Big One?). But, I’ve been fortunate. I haven't had that many flare-ups since I was diagnosed (2011), so, I've been relatively lucky compared to what I've heard from others. John, my buddy from high school in Brooklyn, who I’ve known for more than 40 years, tells me this about his experience with flare-ups: “When they come, I use a long-acting bronchodilator and a rescue inhaler, but the cold weather is no friend of anyone with COPD (emphysema, chronic bronchitis). Cold air thickens the mucus and makes coughing that much more difficult. Last year was the worst I've experienced with SOB and congestion. I coughed so violently I briefly passed out. At the ER, I was given nebulizer treatments of Albuterol and Atrovent. I had some relief but needed steroids to lessen the inflammation,” John told me. Or maybe your symptoms are nothing like these and are their own unique set that no was else has. And since the symptoms are so incredibly unique at times, the duration and possible treatment are that much more unique. “I began to feel better and could breathe again without much constriction,” John added, “I have been paying much closer attention to my symptoms since then to avoid a repeat.” Infections Infections cause 75% or more of the exacerbations. Airway inflammation becomes increased which can result in increased hyperinflation, and decreased gas exchange.3,4 As COPD progresses, exacerbations tend to become more frequent, averaging about three episodes per year.5 That’s about where I’m at. COPD.net’s own John Bottrell had a terrific piece on flare-ups back in April of this year. I recommend reading it - especially the part about creating a COPD Action/ Management Plan. These are plans printed on a single sheet of paper. They are put in an easy to find place, like the refrigerator door. They can help you decide what actions to take when you experience symptoms. One action may be to call your doctor. Another may be to call 911. You can view a sample plan here. How to avoid flare-ups Of course, if possible, and I know it’s not easy, the best thing that can happen is to try to avoid as flare-ups in the first place. Much of what I’ve read about Exacerbations/Flare-up recommend similar approaches to avoid them or fighting them once it happens. The first thing is to schedule and keep regular appointments with your doctor, even if you’re feeling perfectly fine at the time. Get your flu shot every year. I get mine at CVS when I’m picking up a prescription. Walgreens, Right-Aid - almost all pharmacies offer them these days. Wash your hands often with warm water and mild soap and use hand sanitizer. I try to be particularly conscious of this in my pulmonary work-out center, especially around now when everyone is coughing and sneezing (including me!). The staff at my center insist we all wipe down “hand-holds” on the equipment we’ve used as soon as we’re finished using it - you should make sure yours does too. Drink liquids and stay hydrated. Take sleep time seriously. When your body is tired, you’re more likely to get sick. That tip, as I’ve written before, is one that is easily done by me! Please remember, if you or a loved one with COPD are showing symptoms of a flare-up, please remember to call your doctor at once or, if necessary, get yourself to an ER - ASAP! [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] While dyspnea (labored or shortness of breath) is often the most experienced, and most recognized, symptom of COPD, fatigue, or lack of energy, is frequently cited as an even more impactful symptom--especially in terms of personal quality of life. Fatigue is the “silent” symptom that many outsiders don’t fully appreciate or even attribute to COPD. We all feel tired sometimes--it's a normal part of the human experience. But recognizing, and acting upon, COPD-related fatigue can be crucial for avoiding exacerbation and hospitalizations. Cause of fatigue While there are many peripheral causes of fatigue, the primary culprit in COPD is lack of oxygen in the bloodstream. Because of the progressive damage COPD causes the lungs, the air sacs are hindered in their ability to absorb the oxygen you breathe, causing diminished energy for all bodily functions. Impact on quality of life Fatigue can affect any and every part of the day. Sixty-nine percent of respondents in the COPD In America study reported experiencing frequent fatigue, and 79% report that their frequent experience of fatigue is one of the biggest impacts on their daily life. Additionally, a study published in Chest Journal found a strong link between experienced fatigue and perceptions of personal quality of life and depression. Regardless of pulmonary symptoms, higher reports of fatigue were associated with lower levels of perceived quality of life, and greater feelings of depression.2 Constant exertion can weigh on the body both physically and emotionally, and feeling like you have to justify your lack of energy to friends and family can be a burden in itself. But fatigue can be more than just a frustrating symptom to fight--it could also be an indicator of future exacerbations. A study published in the European Respiratory Journal highlighted the predictive nature of COPD fatigue: participants who reported experiencing severe fatigue were 14 times more likely to be hospitalized within the next twenty months than those experiencing less fatigue.1 These studies, among others, shine a light on the importance of recognizing and treating fatigue as a primary, impactful symptom for those with COPD. However, because fatigue can be such a ubiquitous symptom caused by a variety of conditions, it's easy to overlook and underestimate, especially for those on the outside looking in. But if you or your loved one have been struggling with a recent lack of energy, it might be time to prioritize that topic with your physician. Ways to counteract fatigue While there are no specific treatments for fatigue, with the exception of additional oxygen, there are lifestyle tips that can help minimize the tiredness and lack of energy. Keep Active—While it may seem counterintuitive, mild exercise can actually fight the feeling of fatigue, and keep feelings of depression at bay. Exercise increases and enhances blood flow which allows for oxygen and nutrients to more effectively reach the cells and muscle tissue in your body, encouraging greater energy production.3 Stay Hydrated—Water, Gatorade, or other beverages with low sugar and electrolytes will help counteract the feeling of fatigue. Because almost every cell in our bodies is made up primarily of water, sufficient hydration is key to ensuring optimal function. Drink water throughout the day so that your urine is consistently transparent and light in color. Tip: if you feel thirsty, you're already dehydrated. Fresh Air—Ensuring that a large percentage of the air you breath is fresh, outdoor air can make a significant difference. Studies conducted by the EPA find that indoor levels of air pollutants can be 2 to 5 times higher than outdoor levels. Breathing the stale oxygen found in enclosed indoor spaces requires the body to work harder for basic function, ultimately causing fatigue. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"],Often on these pages, we talk about working with your doctor to develop strategies for improving the overall quality of your life so you can live better and longer with COPD. This is a noble claim and it's true. Still, rarely do we define what a quality life is. So, I thought it would be neat to take a look at, and define, what exactly we mean when we say “quality life.” According to Merriam-Webster, "quality of life" is defined as "how good or bad a person's life is." They even gave an example that is similar to what we might say in this community: "The drug is used to improve the quality of life for patients who have chronic illnesses." Our 2016 In America survey of 1,200 individuals living with COPD found that only 2% said their quality of life was unaffected by COPD. That means that 98% said their quality of life was affected to some degree. So, what is a quality of life? A quality life is usually defined by the following "dimensions." (1) Emotional Functioning. You are able to experience appropriate feelings for a given situation in your life. For example, you feel sad when someone you love passes away, or you feel joy when a new baby is born. Other feelings you should experience at times are anger, surprise, disgust, and sadness. The goal here is to feel happy and content most of the time. (2) Social Role Functioning. This is the “ability to develop, maintain, and nurture major social relationships.” You are able to maintain your social role at home and at work. You are able to function appropriately with family, extended family, friends, and acquaintances. (3) Activities of Daily Living. These “are a series of basic activities performed by individuals on a daily basis necessary for independent living at home or in the community.” They include the ability to brush your teeth, bathe yourself, go to the bathroom, dress, cook for yourself, and walk from one area of your home to another. (4) Recreational Pastimes. This is the ability to participate in activities that you enjoy, such as sewing, knitting, photography, reading, golfing, walking, etc. This is important because you'll need to have something you do that you find fun, exciting, entertaining, and challenging to pass the time. I knew one person with COPD who whittled seats on old wooden chairs. I knew one lady who spent her days knitting afghans that she gave to nurses and respiratory therapists. Various factors may impact your ability to enjoy these "dimensions" of life. These include. (5) Physical Functioning. You are able to stay physically active. Of course, as the disease progresses, your ability to stay active may become increasingly difficult. For this reason, your doctor may discuss strategies for keeping you physically active, such as pulmonary rehabilitation. Psychological Factors. Studies show that patients who have a positive perception that what they are doing, or what they can do, will help them live better with this disease, have a better overall quality of life than those who have a grim view of their disease. (5) Depression Symptoms. About 40% of those living with COPD experience depression. In many cases, this is due to inactivity. Those living with the lowest levels of depression experienced higher levels of quality of life. Strategies for improving your overall quality of life. Quality of life should not only be measured by lung function, but by evaluating other factors as well. How do you perceive your disease? Are you experiencing signs of depression? Are you feeling dyspnea? Are you able to stay physically active? Do you have a hobby? Are you able to stay socially active? These are just some questions you may be asked at your doctor visits. These are important questions, and how you answer them, and how your doctor responds, may have a direct bearing on your overall quality of life. You can live a quality life with COPD. You can live a fulfilling life. This is something you will continue to hear over and over and over by healthcare professionals, by COPD experts like myself, and by people just like you who are living with it. It will probably entail working with your doctor, it may entail making some changes in your life. Yet you can still get plenty of joy out of this life even after getting a diagnosis of COPD. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"],COPD has an impact on both physical and mental health. Symptoms can be frustrating and often get in the way of everyday life. It is exhausting and emotionally draining to deal with COPD. We conducted a survey to address diagnosis, quality of life, relationships with family and healthcare providers, and symptoms, along with treatment usage, awareness, and experience. More than 2,000 people shared what life with COPD is like. The Long road to diagnosis For most, symptoms began before the mid-50s, but diagnosis oftentimes doesn’t happen until the late 50s to early 60s. For almost 2/3 of respondents, it took multiple healthcare providers to get a formal diagnosis. Symptoms are frustrating Shortness of breath is the leading and most frustrating symptom, followed by fatigue. It was noted that fatigue has the highest impact on physical well-being. A large percentage of respondents are dealing with other health conditions, including hypertension, respiratory infections, allergies, pneumonia, high cholesterol, and cancer. Exacerbations are scary, and unfortunately very common. Worries and need for support Many want their healthcare provider to look beyond the symptoms; to know about their emotions, struggles, and worries. The biggest worry is that their COPD will worsen, and there is a fear that comes with the “unknown future.” Beyond these emotional struggles, people reported a need for help with everyday activities, household duties being the largest need. Treatment plan satisfaction is low Within a month of diagnosis, more than ¾ of people went on a prescription medication. A small percentage reported waiting over 2 years to start on COPD medication and the biggest reasons for this include lack of serious symptoms, no doctor recommendation, and financial barriers. Although many are currently on medication, respondents expressed a low satisfaction in their current treatment plan. COPD is expensive to manage Many respondents feel that out of pocket spending has a significant negative impact on their household finances, and 25% reported that they avoid using a particular medication because of cost in the past 6 months. Only 12% of respondents have participated in a clinical trial, but 62% expressed that they are interested in participating in a COPD clinical trial. This can be a good option to combat the high cost of treatment. The COPD in America 2018 survey was conducted online from February through April of 2018. The 2,067 patients who completed the survey have been diagnosed with COPD; chronic obstructive pulmonary disease, emphysema, or chronic bronchitis. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"]

COPD in America: Community Findings Over the Years

Straight From the Community: Results from the Sixth Annual COPD In America Survey

What Is it Like to Live With COPD? – Results From the 2019 COPD In America Survey

Coping With COPD Flare-Ups

Fatigue: The Silent Symptom

What Is a Quality Life?

COPD Can Be Debilitating, Frustrating, and Devastating

Resources for Assistance with Household Tasks

Tips for Improving Communication With Your Physician

Guess the COPD In America Statistics

More Than a Feeling: Tired vs COPD Tired

Quality of Life with COPD By The Numbers