Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society · 2024
Standards for the care of people with cystic fibrosis (CF); Planning for a longer life.
СтатьяОбзорНазвание и аннотация: Перевод пока не подготовлен
Обработка статьи · этапы, ошибки и управление
Загрузка состояния…
Ошибки и ограничения
История · было → стало
Состояние обновляется каждые 5 секунд, пока блок открыт. Процент показывается только там, где известен объём работы. Пауза останавливает продолжение этапа; текущий запрос к источнику может завершиться.
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
Аннотация
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.