Standards for the care of people with cystic fibrosis (CF); Planning for a longer life

•This is the last of 4 papers updating the standards for the care of people with CF.•The work involved extensive stakeholder engagement throughout the CF community.•We consider key points during the life journey, including family planning.•Partnership working between the CF team and the person with...

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Published in:	Journal of cystic fibrosis Vol. 23; no. 3; pp. 375 - 387
Main Authors:	Gramegna, Andrea, Addy, Charlotte, Allen, Lorna, Bakkeheim, Egil, Brown, Catherine, Daniels, Thomas, Davies, Gwyneth, Davies, Jane C., De Marie, Ken, Downey, Damian, Felton, Imogen, Hafkemeyer, Sylvia, Hamouda, Samia, Kendall, Victoria, Lindberg, Ulrika, Macek, Milan, Mayell, Sarah, Pearlsman, Oren, Schechter, Michael S., Salvatori, Lidia, Sands, Dorota, Schwarz, Carsten, Shteinberg, Michal, Taylor, Julia, Taylor-Cousar, Jennifer L., Taylor-Robinson, David, Watkins, Bethan, Verkleij, Marieke, Bevan, Amanda, Castellani, Carlo, Drevinek, Pavel, Gartner, Silvia, Lammertyn, Elise, Landau, Eddie (Edwina) C., Middleton, Peter G., Plant, Barry J., Smyth, Alan R., van Koningsbruggen-Rietschel, Silke, Burgel, Pierre-Régis, Southern, Kevin W.
Format:	Journal Article
Language:	English
Published:	Netherlands Elsevier B.V 01-05-2024
Subjects:	Cystic fibrosis Cystic Fibrosis - therapy Family Humans Longer life Quality of Life Standard of Care Standards of care Standards of care Cystic fibrosis Family Longer life
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Summary:	•This is the last of 4 papers updating the standards for the care of people with CF.•The work involved extensive stakeholder engagement throughout the CF community.•We consider key points during the life journey, including family planning.•Partnership working between the CF team and the person with CF is key to achieve their hopes and aspirations.•People with CF should have opportunity to shape and contribute to research. 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.
Bibliography:	ObjectType-Article-1 SourceType-Scholarly Journals-1 ObjectType-Feature-2 ObjectType-Review-3 content type line 23
ISSN:	1569-1993 1873-5010 1873-5010
DOI:	10.1016/j.jcf.2024.05.007