In last month’s patient meetings here at Wythenshawe Hospital, the topic of pulmonary rehabilitation (PR) came up. Some people said it had been useful, some people felt pushed into it, some people felt it was too much and actually made them feel worse instead of better.
This gave us food for thought and we went away to look at the literature. Has anyone studied the outcomes of PR from the patients’ perspective?
The answer was yes! In October last year a paper was published on exactly that, a survey of 1685 people with self-reported chronic lung disease in 29 countries.
Here is a link to the article.
The survey was developed to better understand patients’ perspectives on PR and to identify challenges faced both by patients who have taken part in PR and those who might be eligible but have not had the opportunity.
The survey was sent out via the European Lung Foundation/European Respiratory Society and American Thoracic Society Public Advisory Roundtable professional patient networks, and via the COPD Foundation and Pulmonary Fibrosis Foundation to patients with a wide range of chronic lung diseases.
Interestingly, it appears that none of the patients reported that their lung condition to be Aspergillosis. 55% reported COPD, 22% Pulmonary Fibrosis, 6% Pulmonary Hypertension, 4.5% Asthma, 1.7% Bronchiectasis, 1.6% Lung Cancer, 1.3% Cystic Fibrosis, 8% other lung condition.
Most of the patients who completed the survey were 61 or over and most had heard about PR from their healthcare provider. 92% of respondents thought that PR should be a part of healthcare services available to all patients that might benefit, and yet only 54% of respondents had ever taken part in a PR programme.
There were some challenges to taking part in PR, such as travel problems and cost, but when asked why they would say to a patients considering PR, all the people who responded did so positively with phrases like:
- Absolutely do it!
- A must!
- It allows you to move around and breathe better
- Absolutely go all in!
- Be open about your symptoms and condition
- Begin as soon as possible
- Best thing I ever did to help manage this disease
- Don’t be a damn fool – go and help yourself
- Don’t be scared
- It will change your life
- It works!
So if you’re offered PR, why not give it a go? Or if you’ve already taken part in PR, what did you make of it? Let us know.
We know that we still have lots of work to do in terms of awareness. The authors did not distribute their survey through any channels that were accessible to our patients. The National Aspergillus Centre needs to make sure that it has strategic partnerships in place with larger organisations like the European Lung Foundation/European Respiratory Society so that we’re aware when they are doing work that allows the patient voice to be heard and our patients’ voices can be part of that shout!
The British Lung Foundation has some great information on PR too, so take a look.