BibTex format
@article{Gramegna:2024:10.1016/j.jcf.2024.05.007,
author = {Gramegna, A and Addy, C and Allen, L and Bakkeheim, E and Brown, C and Daniels, T and Davies, G and Davies, JC and De, Marie K and Downey, D and Felton, I and Hafkemeyer, S and Hamouda, S and Kendall, V and Lindberg, U and Macek, M and Mayell, S and Pearlsman, O and Schechter, MS and Salvatori, L and Sands, D and Schwarz, C and Shteinberg, M and Taylor, J and Taylor-Cousar, JL and Taylor-Robinson, D and Watkins, B and Verkleij, M and Bevan, A and Castellani, C and Drevinek, P and Gartner, S and Lammertyn, E and Landau, EEC and Middleton, PG and Plant, BJ and Smyth, AR and van, Koningsbruggen-Rietschel S and Burgel, P-R and Southern, KW},
doi = {10.1016/j.jcf.2024.05.007},
journal = {J Cyst Fibros},
pages = {375--387},
title = {Standards for the care of people with cystic fibrosis (CF); Planning for a longer life.},
url = {http://dx.doi.org/10.1016/j.jcf.2024.05.007},
volume = {23},
year = {2024}
}
RIS format (EndNote, RefMan)
TY - JOUR
AB - This is the final of four papers updating standards for the care of people with CF. That this paper "Planning a longer life" was considered necessary, highlights how much CF care has progressed over the past decade. Several factors underpin this progress, notably increased numbers of people with CF with access to CFTR modulator therapy. As the landscape for CF changes, so do the hopes and aspirations of people with CF and their families. This paper reflects the need to consider people with CF not as a "problem" to be solved, but as a success, a potential and a voice to be heard. People with CF and the wider CF community have driven this approach, reflecting many of the topics in this paper. This exercise involved wide stakeholder engagement. People with CF are keen to contribute to research priorities and be involved in all stages of research. People with CF want healthcare professionals to respect them as individuals and consider the impact of our actions on the world around us. Navigating life presents challenges to all, but for people with CF these challenges are heightened and complex. In this paper we highlight the concerns and life moments that impact people with CF, and events that the CF team should aim to support, including the challenges around having a family. People with CF and their care teams must embrace the updated standards outlined in these four papers to enjoy the full potential for a healthier life.
AU - Gramegna,A
AU - Addy,C
AU - Allen,L
AU - Bakkeheim,E
AU - Brown,C
AU - Daniels,T
AU - Davies,G
AU - Davies,JC
AU - De,Marie K
AU - Downey,D
AU - Felton,I
AU - Hafkemeyer,S
AU - Hamouda,S
AU - Kendall,V
AU - Lindberg,U
AU - Macek,M
AU - Mayell,S
AU - Pearlsman,O
AU - Schechter,MS
AU - Salvatori,L
AU - Sands,D
AU - Schwarz,C
AU - Shteinberg,M
AU - Taylor,J
AU - Taylor-Cousar,JL
AU - Taylor-Robinson,D
AU - Watkins,B
AU - Verkleij,M
AU - Bevan,A
AU - Castellani,C
AU - Drevinek,P
AU - Gartner,S
AU - Lammertyn,E
AU - Landau,EEC
AU - Middleton,PG
AU - Plant,BJ
AU - Smyth,AR
AU - van,Koningsbruggen-Rietschel S
AU - Burgel,P-R
AU - Southern,KW
DO - 10.1016/j.jcf.2024.05.007
EP - 387
PY - 2024///
SP - 375
TI - Standards for the care of people with cystic fibrosis (CF); Planning for a longer life.
T2 - J Cyst Fibros
UR - http://dx.doi.org/10.1016/j.jcf.2024.05.007
UR - https://www.ncbi.nlm.nih.gov/pubmed/38789317
VL - 23
ER -