Negin Hajizadeh, MD, MPH, associate professor of medicine in the division of pulmonary, critical care and sleep medicine with Northwell Health’s Department of Medicine, is studying the effects of exercise science on a population whose every breath can be a struggle — while also paying special attention to treatment disparities found predominantly among African American and Hispanic populations with end-stage lung disease.
Dr. Hajizadeh, also the director of decision science in the Feinstein Institute for Medical Research’s new Center for Health Innovations and Outcomes Research, says the evidence shows that patients with chronic obstructive pulmonary disease (COPD) – including chronic bronchitis and emphysema — can improve their quality of life through exercise and rehabilitation. However, many patients, in particular underserved, disparity populations are unable to access this life-altering resource. Disparities, can result from patients’ lack of access to transportation needed to get to a rehabilitation facility, limited education or communication problems with their providers, and lack of physician referral to rehabilitation programs because of perceptions that patients will not comply.
Northwell’s Chronic Pulmonary Disease Management Program (CPDMP) is attempting to overcome some of the barriers facing underserved populations, starting with African-American and Hispanic patients with COPD. The CPDMP brings the pulmonary rehabilitation program in to their homes or local community centers so that they can work remotely with a dedicated respiratory therapist and a pulmonologist (Dr. Hajizadeh) on an exercise regimen and care plan to better cope with this debilitating disease. The program also includes regular follow up by a social worker to facilitate the transition out of the hospital and obtaining follow up appointments, and prescribed medications.
“There is no cure for COPD or emphysema but there are things that can be done to improve the quality of breathing and by extension the quality of a patient’s life,” said Dr. Hajizadeh. It starts with education and improved decision-making that can improve quality of life during its final phases. “For example, the idea of training people with COPD to purse their lips when they exhale to take pressure off the lungs is a relatively simple adjustment that has significant ramifications. One of the characteristics of COPD is that it causes the lungs to close up when people breathe out. Pursed lip breathing for people with COPD acts as the release of a pressure valve.
That’s just one element of educating patients to help them understand the breathing anxiety cycle. “When you feel you can’t breathe, you naturally tend to breathe faster, but the faster you breathe, the more air gets trapped,” Dr. Hajizadeh said. “By slowing down one’s breathing and learning to push one’s belly out, you are controlling the breathing process. It’s counterintuitive to what patients feel when they struggle for breath. Many believe they need to quicken their rate of breathing to bring more air into the lungs which only makes the sensation of feeling like they are suffocating worse.”
She said patients can use the other muscles in their bodies to help lessen the struggle as well. “The goal is to put less stress on the lungs by exercising and properly using the diaphragm and intercostal muscles. If we develop the muscles throughout the body, including those surrounding the ribcage, patients will feel less pressure on their lungs to do all of the work of breathing. It increases overall strength so other parts of the body can do the work, not to mention the general well-being and self-efficacy that comes from working out and moving the body.”
Dr. Hajizadeh said that although pulmonary rehabilitation has proven to be effective, less than two percent of patients who could benefit from it currently receive it.
“Through rehabilitative exercises, patients are better able to control symptoms which allows them to function better in their daily activities leading to improved quality of life and less hospitalization. We have to figure out a feasible way of bringing this therapy into all patients’ lives.”
Many elements are interconnected, Dr. Hajizadeh said, which is why it’s important to address emotional, environmental and physical needs as well, which all pulmonary rehabilitation programs also focus on.
"Lugging around an oxygen tank creates social barriers. Meeting and interacting with other people who share in the same struggles has many benefits in terms of lessening the feelings of isolation and learning from each other on how they cope in social situations. People who are isolated are far less healthy both physically and emotionally than those who have social connections.”
Dr. Hajizadeh’s Patient Centered Outcomes Research Institute (PCORI)-funded study measures whether Northwell’s Chronic Pulmonary Disease Management Program (CPDMP) is as good, or better, than referrals to regular pulmonary rehabilitation programs. With the approval of a patient’s primary pulmonary physician, the CPDMP offers social worker support and continuity. African American and Hispanic COPD patients are recruited from the inpatient setting where they are being treated for a COPD exacerbation, and invited to join the study. The CPDMP addresses barriers to access by bringing pulmonary rehabilitation into the home and conducting sessions in both Spanish and English (and potentially several other languages) as compared to the traditional referral to care model.
“The idea for the CPDMP came from collaboration with patient partners who have COPD and partners who care for patients with COPD,” Dr. Hajizadeh said of CPDMP. “We continue to work with patient partners as part of the research team as we implement the program and analyze the results. The telehealth component allows us to expand access providing oversight of exercise under the eyes of a remotely located respiratory therapist and an on-call pulmonologist. We supply an exercise bike and conduct supervised exercise sessions twice a week via a remote web-conferencing platform. Exercise may not improve life expectancy for COPD patients but it does improve quality of life…there’s less depression, more self-efficacy in knowing techniques to breathing more efficiently, and realizing that patients are not alone with their illness.”
The success of the program depends on education, communication and ultimately following through on an exercise regimen.
“One of the main problems is nobody has ever discussed the benefits of exercise with the patient,” Dr. Hajizadeh said. “It’s always: here’s a pill take a pill; the non-pharmacological methods are not stressed. Like diabetes, lifestyle and modification and patient buy-in to the program are essential in helping improve one’s quality of life. Exercise is as important as taking medication but people don’t realize it. When they get the sensation — that feeling of suffocating or heart racing — patients will limit themselves by sitting. Unfortunately this worsens patients’ health and ability to breathe by causing muscles to atrophy, which could otherwise be useful to helping the diseased lung."
Ultimately, Dr. Hajizadeh says an improved quality of life for COPD patients depends upon education, exercise and access to health professionals who can guide them in their exercise programs, which Northwell is bringing into the home and monitoring through telehealth.
“There are well-established pulmonary rehabilitative exercises that work,” she said. “How do we make this accessible to all patients regardless of location, severity of illness or education/language barriers?” Here at Northwell, we have devised an intervention that promises to improve quality of life for all patients with severe lung disease, regardless of whether they are able to make it to a physical outpatient location for rehabilitation."