tag:blogger.com,1999:blog-2848916293298934342.post1613808938386228509..comments2023-10-26T07:33:46.550-04:00Comments on 66 roses: I'm not okay with this (and you shouldn't be either!)Erin Moorehttp://www.blogger.com/profile/08027766394549526193noreply@blogger.comBlogger2125tag:blogger.com,1999:blog-2848916293298934342.post-25574435276933675562017-04-10T12:50:23.479-04:002017-04-10T12:50:23.479-04:00Thank you so much for your comment! I am so gratef...Thank you so much for your comment! I am so grateful for the opportunity to connect with others who are learning and sharing! I was at a meeting on Friday where we were discussing the US/Canada study and the response that the CFF gave which was basically that Canada has a different system. And I think that's exactly the point I was trying to make in advocating for this learning health network! What we are trying to do is create a new system, one that learns from everyone and that can achieve outcomes that our current system isn't possible of achieving. I'm not sure why so many people w CF are complacent with this age gap and response from the CFF - the fact remains that better outcomes are possible and we should be doing everything we can to achieve them. <br />Separately, we haven been using PEP with our Vest since our son was about 4 (he's 7 now) and it provides far better airway clearance than the vest alone ever did. When people tell us there isn't research to show the value of one over the other it's infuriating - just because research hasn't been done on something doesn't mean it's not relevant or true! I'm so grateful for your comment!<br />Erin Moorehttps://www.blogger.com/profile/08027766394549526193noreply@blogger.comtag:blogger.com,1999:blog-2848916293298934342.post-34970674221849123232017-04-10T01:35:29.167-04:002017-04-10T01:35:29.167-04:00I have been enjoying your posts and I'm encour...I have been enjoying your posts and I'm encouraged by your passion to make the system better. As a Canadian mom of a recently diagnosed 13 yr old son, I have delved into the deep end learning as much as I can about CF and when the US vs Canada study came out, it was of particular interest. One thing that was not within the scope of that study, but I think has a possibly profound affect on the rate of exacerbations, is a Canadian study which compared the use of PEP vs the vest. It found that people using the vest had more exacerbations, and the time to the first one was 30% sooner than those using PEP. In fact the study was halted early since so many were getting sicker with the vest. Lung function, patient satisfaction and health related quality of life scores were similar, although PEP is considerably faster and cheaper. The study has largely been ignored in the US. Our clinic which took part in the study is fine with using the vest in addition to PEP, but not as the only form of physio. https://www.ncbi.nlm.nih.gov/pubmed/23407019Anonymoushttps://www.blogger.com/profile/17156990089294027171noreply@blogger.com