Chronic Obstructive Pulmonary Disease (COPD) affects 30 million Americans, yet only about 12 million know they have it.

COPD is a term given to progressive lung diseases like emphysema and chronic bronchitis.  People with COPD have increasing breathing difficulty over time and may experience wheezing, shortness of breath and chest tightness. COPD is most common in older adults.

Stephanie Williams, RRT

“We are on the verge of a huge boom in the number of patients diagnosed with COPD,” said Stephanie Williams. “We need to be working together to come up with effective tools and workflows that will help us not just manage, but really give these people what they need to live well with COPD. We need to have a plan for their care.”

Williams is a registered respiratory therapist with a background in acute care and a passion for those often forgotten COPD patients. She feels a connection to this underserved group of people who are eager for information on their disease and looking for support. Williams said this population is sometimes dismissed because COPD is often caused by smoking – a lifestyle choice.

“There can be a stigma and lack of compassion for people who suffer from COPD,” said Williams.

As the Community Project Manager for the COPD Foundation’s Tennessee COPD Outreach Initiative, Williams assists healthcare providers to reach out to patients with COPD and offer them resources and support. The COPD Foundation was established to expand services for COPD and improve the lives of people affected by the disease.

Williams also helps healthcare providers work to reduce their hospital readmissions resulting from COPD-related complications.

Opportunity for Improvement

Data from COPD Foundation

According to the Agency for Healthcare Research and Quality (AHRQ), COPD is one of the top reasons for hospital readmissions for Medicare patients. atom Alliance’s Care Coordination Communities – groups of providers who work together to solve local healthcare problems – have identified COPD as an opportunity for improvement to reduce hospital readmissions.

In Tennessee, almost nine percent of the general population has COPD and ranks third in the nation for the disease. In addition, about 50 percent of adults in the state currently smoke or have a history of smoking, the number one risk factor for COPD.

“Tennessee is right in the middle of the ‘tobacco belt,’ an area that includes Kentucky and Alabama as well,” said Williams. “Many people are former smokers, with the damage done early in life.” Areas of heavy industrial and agricultural operations see more COPD patients than others, she said. Also, locations known for allergy problems will see higher rates of COPD.

Working Together

Williams assists healthcare providers with free education, training and resources from the COPD Foundation to help patients manage their symptoms and recognize challenges. She also teaches classes for patients and trains educators to teach classes. The goal is to prevent patients from being hospitalized by arming them with knowledge.

“We provide valuable, honest and easy-to-digest materials for patients. Not just in a hospital setting, but in primary care offices, skilled nursing facilities and home health agencies as well,” said Williams.

Williams became a part of the Nashville area Care Coordination Community, fostered by atom Alliance team members, in order to join forces with others who were interested in strengthening the support network for COPD patients and reducing the rate of hospital readmissions. The community consists of more than 150 members from 50 different organizations, representing a wide variety of healthcare providers like doctors, nurses, pharmacists, hospital administrators, home health caregivers, nursing home caregivers, paramedics and patient advocates. She has expanded her work in Tennessee to similar Care Coordination Communities in Columbia, Cookeville, Jackson and Knoxville.

Innovative and Relevant Resources

Harmonicas for Health class

In addition to the materials and training, said Williams, the COPD Foundation offers a free Information Line and online Live Chat. People with COPD can access the hotline or live chat to talk to counselors who also have been diagnosed with COPD.

“The patient calling in has an immediate connection with someone on the other end of the line that knows what they’re thinking, what they’re feeling and what they’re going through,” said Williams. “They find out that they are not alone.”

Williams has also helped develop creative programs like the Harmonicas for Health classes. This pilot program in the Nashville area used music therapy to combat breathing problems. Funded by the Academy of Country Music, this five-week program taught patients how to play the harmonica, how breathing works and how the lungs operate.

“The program was a huge success. One patient who had to quit her church choir due to breathing problems was able to strengthen her lung capacity enough to rejoin the choir after completing the program,” said Williams. “The joy that she got from regaining her ability to sing was really moving.”

Williams also points out that depression rates among the COPD population tend to be high due to nicotine dependence, difficulty completing daily activities and hopelessness that may come with a COPD diagnosis. She believes making music together helped the participants in the program enjoy life again.

“To see and hear that laughter, we knew we were helping them with more than their breathing capacity,” Williams said.

Plans to spread the Harmonicas for Health program and other innovative programs like it across Tennessee and to surrounding states are underway.

Spreading the Support

Tennessee has support for COPD resources and research from the state government and stakeholders like the National Institutes of Health’s (NIH) Learn More Breathe Better Program. To launch support for the COPD community in other states, Williams suggests drafting a COPD state action plan in partnership with the state hospital association or a healthcare professional society. Seeking partnerships with organizations like pharmaceutical companies and hospital systems can help fund the assistance needed for the COPD community.

“We want a variety of stakeholders to come together and develop a state-wide plan, so that no matter where a patient is, they’re getting the same treatment,” said Williams. “We aim to set the same high standards of care across an entire state.”

For more on the COPD Foundation, visit http://www.copdfoundation.org.

For more on the work that atom Alliance does with Care Coordination Communities, visit http://atomalliance.org/initiatives/coordination-of-care/communities/.