It’s uncharted territory! A nice article out yesterday reviewing advances in CF coordinated care, new challenges and new targeted therapies. Some very important points are made! The burden of disease (TIME to treat CF) that CFers and their caregivers have to go through to keep as healthily as they can is extremely taxing on CFers and their families. It’s also crucial that we address the Adolescence years as CFers transition into Adulthood. Adolescence is often a perilous time for CFers, because normal teenage rebellion may lead some CFers to not cooperate with the treatment regimens. Such adherence problems can lead to life threatening infections and earlier complications in adulthood. As they move into adulthood, CFers may have a difficult time adhering to therapy while they are in school, working, or caring for a family.
I believe technology can play an important role in helping CFers and caregivers get through these late adolescent to Adulthood years (through college!) by providing them easy access to timely and accurate information such as education, access to support groups, friends, family, caregivers, treating physicians…etc. Through a gamified mobile application environment they will have the tools they need to get through the tough times. This may lead to increased adherence and in turn better outcomes for CFers as they enter their adult years, ready for a whole new set of challenges like employment, building a family, having children of their own and having to think about a money, savings, retirement plan!
Longer lives for CFers are also creating a new set of challenges for healthcare professionals with for example greater risk of osteoporosis, diabetes, and some cancers. It’s uncharted territory! Education for both the CF community and the healthcare professionals is key in this largely uncharted territory.
Article: http://jama.jamanetwork.com/article.aspx?articleid=1906608
Like, comment and share on Facebook: https://www.facebook.com/knowcf/posts/10152837987813777
- Chris Baldwin, PhD
Friend me here: https://www.facebook.com/cysticfibrosisdotcom
I believe technology can play an important role in helping CFers and caregivers get through these late adolescent to Adulthood years (through college!) by providing them easy access to timely and accurate information such as education, access to support groups, friends, family, caregivers, treating physicians…etc. Through a gamified mobile application environment they will have the tools they need to get through the tough times. This may lead to increased adherence and in turn better outcomes for CFers as they enter their adult years, ready for a whole new set of challenges like employment, building a family, having children of their own and having to think about a money, savings, retirement plan!
Longer lives for CFers are also creating a new set of challenges for healthcare professionals with for example greater risk of osteoporosis, diabetes, and some cancers. It’s uncharted territory! Education for both the CF community and the healthcare professionals is key in this largely uncharted territory.
Article: http://jama.jamanetwork.com/article.aspx?articleid=1906608
Like, comment and share on Facebook: https://www.facebook.com/knowcf/posts/10152837987813777
- Chris Baldwin, PhD
Friend me here: https://www.facebook.com/cysticfibrosisdotcom