Academic Journal
Standards for the care of people with cystic fibrosis (CF); Planning for a longer life
| العنوان: | Standards for the care of people with cystic fibrosis (CF); Planning for a longer life |
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| المؤلفون: | Allen, Lorna, Bakkeheim, Egil, Brown, Catherine, Daniels, Thomas, Gramegna, Andrea, Addy, Charlotte, Gartner, Silvia |
| المساهمون: | Institut Català de la Salut, Gramegna A Department of Pathophysiology and Transplantation, Università degli Studi di Milano, Respiratory Unit, Respiratory Unit and Adult Cystic Fibrosis Center, Fondazione IRCCS Cà Granda Ospedale Maggiore Policlinico, Milano, Italy. Addy C All Wales Adult Cystic Fibrosis Centre, University Hospital Llandough, Cardiff and Vale University Health Board, Cardiff, UK. Allen L Cystic Fibrosis Trust (UK), 2nd Floor, One Aldgate, London, UK. Bakkeheim E Norwegian Resource Centre for Cystic Fibrosis, Oslo University Hospital, Oslo, Norway. Brown C West Midlands Adult CF Centre, Birmingham, UK. Daniels T NIHR Biomedical Research Centre, School of Clinical and Experimental Sciences, Faculty of Medicine, University of Southampton, Wessex Adult Cystic Fibrosis Service, University Hospital Southampton NHSFT, Southampton, UK. Gartner S Unitat de Pneumologia Pediàtrica i Fibrosi Quística, Vall d’Hebron Hospital Universitari, Barcelona, Spain, Vall d'Hebron Barcelona Hospital Campus |
| المصدر: | Scientia |
| بيانات النشر: | Elsevier |
| سنة النشر: | 2024 |
| مصطلحات موضوعية: | Pacients - Satisfacció, Fibrosi quística - Tractament, Assistència sanitària, DISEASES::Respiratory Tract Diseases::Lung Diseases::Cystic Fibrosis, Other subheadings::Other subheadings::/therapy, HEALTH CARE::Health Services Administration::Quality of Health Care::Quality Indicators, Health Care::Standard of Care, HEALTH CARE::Environment and Public Health::Public Health::Epidemiologic Measurements::Demography::Health Status::Quality of Life, ENFERMEDADES::enfermedades respiratorias::enfermedades pulmonares::fibrosis quística, Otros calificadores::Otros calificadores::/terapia, ATENCIÓN DE SALUD::ambiente y salud pública::salud pública::medidas epidemiológicas::demografía::estado de salud::calidad de vida, ATENCIÓN DE SALUD::administración de los servicios de salud::calidad de la atención sanitaria::indicadores de calidad en la asistencia sanitaria::estándar asistencial |
| الوصف: | Cystic fibrosis; Family; Standards of care ; Fibrosi quística; Família; Estàndards d'atenció ; Fibrosis quística; Familia; Estándares de atención ; 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. |
| نوع الوثيقة: | article in journal/newspaper |
| وصف الملف: | application/pdf |
| اللغة: | English |
| تدمد: | 1569-1993 |
| Relation: | Journal of Cystic Fibrosis;23(3); https://doi.org/10.1016/j.jcf.2024.05.007; Gramegna A, Addy C, Allen L, Bakkeheim E, Brown C, Daniels T, et al. Standards for the care of people with cystic fibrosis (CF); Planning for a longer life. J Cyst Fibros. 2024 May 24;23(3):375–87.; https://hdl.handle.net/11351/11616 |
| DOI: | 10.1016/j.jcf.2024.05.007 |
| الاتاحة: | https://hdl.handle.net/11351/11616 https://doi.org/10.1016/j.jcf.2024.05.007 |
| Rights: | Attribution 4.0 International ; http://creativecommons.org/licenses/by/4.0/ ; info:eu-repo/semantics/openAccess |
| رقم الانضمام: | edsbas.C19958FA |
| قاعدة البيانات: | BASE |
| تدمد: | 15691993 |
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| DOI: | 10.1016/j.jcf.2024.05.007 |