American Thoracic Society: Survey Reveals Majority of Patients Diagnosed With Chronic Pulmonary Disorders Are Unaware of Standard-of-Care Treatment for Their Deadly Disease

NEW YORK, Nov. 12 -- The American Thoracic Society issued the following news release:

Sixty-two percent of people diagnosed with chronic pulmonary disorders have never heard of pulmonary rehabilitation - an effective non-pharmacological treatment option covered by Medicare and private insurance - according to a survey released today by the American Thoracic Society (ATS).

Pulmonary rehabilitation is a comprehensive 6- to 12-week program of exercise and education that is proven to reduce symptoms, improve exercise capacity and enhance quality of life for patients living with chronic respiratory diseases. However, it is significantly underutilized, particularly as compared to pharmacological treatments such as inhalers or steroids. A recent study published in the Annals of the American Thoracic Society showed only 1.9 percent of patients hospitalized for COPD received pulmonary rehabilitation within six months of being discharged.

The survey sample comprised 500 patients1 diagnosed with COPD, pulmonary hypertension, interstitial lung disease or other chronic pulmonary disorders. It was conducted by Wakefield Research, an independent market research agency, and commissioned by ATS, a non-profit organization dedicated to improving global health by advancing research, patient care and public health in pulmonary disease, critical illness and sleep disorders.

Chronic respiratory diseases, the most common being chronic obstructive pulmonary disease (COPD), are the third leading cause of death in the U.S. after heart disease and cancer; of these, they are the only cause of death that is on the rise. The survey revealed that 40 percent of patients diagnosed with these diseases are unaware of how deadly their condition is. Respondents ranked stroke, diabetes and Alzheimer's over chronic respiratory diseases as leading causes of death. In fact, 28 percent of respondents did not rank chronic respiratory diseases in the top three at all.

The new survey data builds upon the 2015 American Thoracic Society/European Respiratory Society (ATS/ERS) policy statement on implementation of pulmonary rehabilitation, which highlighted key gaps in its utilization worldwide. Lack of health care provider and patient awareness were identified as key concerns. This follow-up survey confirms the concerns identified in the original statement and highlights the urgent need for increasing awareness of pulmonary rehabilitation.

People with chronic respiratory diseases are often limited in many daily activities and may not be able to even walk from one side of their home to the other, prepare a meal or wash their hair, according to Carolyn L. Rochester, MD, professor of medicine, pulmonary critical care and sleep medicine, Yale University of Medicine, past chair, ATS Assembly on Pulmonary Rehabilitation.

"With these diseases being a leading cause of death and the only one that's on the rise, we had to ask, 'Why aren't patients getting treatment that's proven to reduce their symptoms and improve their quality of life?'" said Rochester. "Although the ATS/ERS statement addressed this issue, this is the first U.S. study to quantitatively answer the question. Raising awareness of pulmonary rehabilitation, which is similar to cardiac rehabilitation for people with chronic heart conditions, is critical so that individuals can advocate for themselves."

According to the new survey, in contrast with the lack of knowledge of pulmonary rehabilitation, the majority of patients with a chronic pulmonary disorder have heard of oxygen therapy (70 percent) as well as medicinal interventions, including long-acting or maintenance inhalers (61 percent), short-acting or rescue inhalers (52 percent) and inhaled or oral steroids (52 percent) as treatments for their disease.

The Wakefield survey also found that many patients who have heard of pulmonary rehabilitation do not pursue treatment or fail to complete treatment. Of the 38 percent of respondents who had heard of pulmonary rehabilitation, only 29 percent completed the program. For those who did not participate in pulmonary rehabilitation or started and did not complete the program, the following were the most common reasons given:

* 36 percent said it is too difficult to travel there.

* 28 percent said the program is too expensive.

* 27 percent said their breathing is so bad, it is difficult to leave home.

* 27 percent said it is emotionally too difficult, such as due to feelings of embarrassment or anxiety.

"Understanding the reasons why people don't utilize pulmonary rehab and minimizing the barriers to participation enables us to help more people with COPD and other chronic respiratory diseases get the treatment they need," said Chris Garvey, FNP, MSN, MPA, MAACVPR, UCSF Sleep Disorders and Pulmonary Rehabilitation. "Pulmonary rehab works by strengthening the muscles to ease the burden on the lungs. It's a safe, friendly environment to learn how to manage breathing, allowing patients to not only feel better, but to do more in their lives - activities they currently avoid because of their symptoms."

The survey revealed that more than half (57 percent) of respondents avoid climbing stairs due to their breathing problems. Half (50 percent) don't carry items when they walk. Other avoided tasks include:

* Household chores, such as cleaning the house or doing laundry (48 percent)

* Going outside their home to do errands, such as grocery shopping (43 percent)

* Going outside their home to attend social events or gatherings (42 percent)

* Caring for their pet(s), such as taking them for walks (37 percent)

* Playing with or entertaining their children or grandchildren (37 percent)

* Cooking or preparing meals (28 percent)

* Daily personal hygiene tasks, such as washing their hair or brushing their teeth (28 percent)

People who complete a pulmonary rehabilitation program report having a positive experience.

"When I first started pulmonary rehabilitation, I couldn't even get mail from my mailbox, so it was hard to imagine exercising. Every two weeks, I added in a new activity and within nine months, I was able to do most of what I wanted to do," said Lynn Markwell, a patient who completed pulmonary rehabilitation one year after being diagnosed with interstitial lung disease in 2004. "I was told I didn't have long to live, but if you do the exercises, learn to manage your breathing and know your medications, you can feel better and start living your life again."