Individuals with chronic lung diseases — such as cystic fibrosis, interstitial lung disease, chronic obstructive pulmonary disease (COPD), and chronic bronchitis — are sometimes recommended to start a pulmonary rehabilitation program to aid in breathing and improve their well-being. Although it is best for patients to begin pulmonary rehabilitation when their lung disease is at a moderate stage, patients with advanced-stage lung disease also benefit from these programs.
According to the National Heart, Lung, and Blood Institute, pulmonary rehabilitation is a broad program intended to be used alongside medical therapy, not replace it. A pulmonary rehabilitation program may be designed between a patient and his or her doctor or specialists to include exercise training, nutrition counseling, energy-conserving techniques, and breathing strategies. In addition to these physically-based program attributes, mental and psychological attributes such as education on the patient’s lung disease and counseling or joining a support group are included in pulmonary rehabilitation programs.
Although doctors and specialists tailor each rehabilitation program for a specific patient, educational content for pulmonary rehabilitation is sometimes not well suited for patients with interstitial lung disease, including those with idiopathic pulmonary fibrosis. A study published online ahead of print in Chronic Respiratory Disease, entitled “Be Honest and Help Me Prepare for the Future: What People with Interstitial Lung Disease Want from Education in Pulmonary Rehabilitation,” interviewed 18 interstitial lung disease patients and 14 clinicians to gain insight on the true needs of interstitial lung disease patients embarking on a pulmonary rehabilitation program.
Interviewers asked patients eight questions, two of which included “What kind of information do you think is really essential for people with interstitial lung disease to know about their condition?” and “If you could give health professionals one piece of advice about educating people with interstitial lung disease about their condition, what would it be?” When interviewing clinicians, interviewers asked ten questions, most of which were along the lines of “What kind of information do you think would be useful to cover during pulmonary rehabilitation?”
By considering responses together, the researchers were able to find emergent themes in the answers. Patients were generally happy to begin pulmonary rehabilitation sessions but desired interstitial lung disease-specific content. “Some of it (the education) was really good, some of it was common to all of us, but there wasn’t anything that was specific to interstitial lung disease,” stated one patient. Patients felt it was important to know what the future held in terms of prognosis and end-of-life planning, and they need their clinicians to be open and honest about their predictions for the future.
From the clinicians’ perspective, it is important to discuss advanced care planning. However, unlike patients, clinicians did not feel as though advanced care planning should be discussed in a group setting. “I think it’s extremely difficult for a person who is responsible for a group’s therapy to individualize a discussion about end of life,” stated one clinician.
Currently, there is no one set pulmonary rehabilitation program to be used with lung disease patients. There are a handful of clinical trials that are exploring different activities that can be used with a pulmonary rehabilitation program, such as yoga and tai chi, and most are still recruiting participants. It is important to continue to study different programs for different types of lung diseases because, as stated by the authors of the current study, “We conclude that people with interstitial lung disease have specific educational needs that may not be met in the current pulmonary rehabilitation format.”