Mortality in CF

Question

Hello,
I’ve already written once. I am a student of a bachellor degree in nursing. I am writing a thesis on Quality of life of adolescents and adults with CF. In spite of the sad nature of this question, I need to have a complete information on this topic. I need to find out what is the latest percentage of mortality of CF patients. I tried searching for it in ÚZIS, but the latest data is from 2001. I would like to ask you for some more up to date information. Thank you for help and have a nice day. Anna M.

Answer

Hello,
Unfortunately the national Czech CF register is not satisfactory, we can provide you with information only about patients registered in Prague CF Center about which we keep longterm records. Since 2001 4-7 patients die from roughly 280 monitored. Thus 1,5 to 2,5%. They are mostly adults, luckily, death in child age is an exception these days. Our situation is complicated by the fact that till 1989 the possibilities for treatment were limited compared to the West. Therefore the mortality is higher – patients who reach critical stage are those who did receive modern treatment from early childhood. Life expectancy curves of czech children born after 1995 are already similar to the american ones. I recommend to read the February issue of Czech-Slovak Pediatrics Journal(2008, vol. 63, no. 2), article on page 76 is dedicated to this issue.
Best regards, Dana Zemkova and Jitka Brazova

23.04.2009