An online patient survey has found that 96% of pulmonary fibrosis patients, and 93% of cystic fibrosis patients, support being able to monitor their lung function at home between visits to the doctor, reports Pulmonary Fibrosis News. This survey should help healthcare workers to better understand patient needs and priorities.
Both of cystic fibrosis and pulmonary fibrosis affect a person’s ability to breathe, so measuring lung function is an important part of disease management. Cystic fibrosis (CF) is an inherited life-long progressive condition that affects over 70,000 people worldwide. It causes sticky mucus to build up in organs including the lungs, and this leads to symptoms such as coughing, shortness of breath, and frequent infections. The mucus also builds up in digestive organs, in particular the pancreas; this causes patients’ digestive processes to often be compromised leading to nutritional deficiencies. The condition does not currently have a cure, but can be treated in a number of ways, including through exercise, breathing techniques to move mucus, and antibiotics.
Pulmonary fibrosis (PF) is also a disease that affects the lungs. ‘Pulmonary’ means lung, and ‘fibrosis’ is another word for scar tissue. It describes scarring in the lungs that can be caused by a range of environmental and genetic factors. The more scarring there is in the lungs, the more difficult it is to transfer oxygen into the blood through breathing. This results in shortness of breath and coughing, and can also cause fatigue, weight loss, appetite loss, and chest pain. Most patients with PF are over 65, and approximately 1 in every 200 people in the United States over this age will have PF.
Measuring lung function is an important way to keep track of disease progression for both CF and PF patients. A study carried out this year by PMD Healthcare investigated patients’ attitudes towards their treatment, and found that the vast majority would like to have the option of measuring lung function at home between visits to the doctor. 96% of PF patients supported it, as did 93% of CF patients. The patients surveyed said that being able to moniter lung function at home was very important to them. They cited a range of reasons, including a greater peace of mind, being able to identify disease flare-ups earlier, less anxiety about being tested in a clinic, learning about their own lung functioning, and being able to have more control over their care.
Despite the popularity of home measurement, 78% of CF patients and 100% of PF patients said that their doctors had never brought up using a remote monitoring device at home with them. However, they said that they would be comfortable bringing it up with the doctor themselves. One way of measuring lung function from home would be using a spirometer, which is a remote monitoring device. The first spirometer was developed by PMD and approved by the US Food and Drug Administration in 2011, and since then a range of other options have become available.
The results of this survey will help healthcare providers to better understand patient opinions and priorities. It also shows the importance that many PF and CF patients place on being able to track their health by themselves from home.
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To find out more about CF, check out our partners Cystic Life and Strawfie Challenge.
