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Cystic fibrosis foundation position paper: Redefining the CF care model.

Authors :
Goetz, D.M.
Brown, R.F.
Filigno, S.S.
Bichl, S.L.
Nelson, A.L.
Merlo, C.A.
Juel, R.
Lomas, P.
Hempstead, S.E.
Tran, Q.
Brown, A.W.
Flume, P.A.
Source :
Journal of Cystic Fibrosis. Nov2024, Vol. 23 Issue 6, p1055-1065. 11p.
Publication Year :
2024

Abstract

• Pioneered in the 1960s and defined by clinical practice guidelines in 1997, the CF Care Model has resulted in remarkable improvements in clinical outcomes, including increase in the median predicted age of survival to 61 years for people with CF born between 2019 and 2023 in the United States. Evolution of the CF Care Model is necessary due to improved survival and outcomes, development of CFTR modulators, and technology advances allowing telemedicine and home monitoring. • This position paper was developed by an interdisciplinary committee, including individuals with CF and their families, to provide guidance for routine visit frequency and maintenance health screening based on available evidence and expertise. • Reduced CF clinic visit frequency in children ≥ 6 years and adults to every 4–6 months can be considered when health is determined to be stable in all domains, including physical, mental and social determinants of health. • Spirometry is recommended at least twice yearly, the importance of sputum or throat cultures every 3 months is affirmed despite possible reduction in visit frequency, chest CT imaging is preferred over chest x-ray, and the re-assessment of fecal elastase after modulators is suggested especially in children. • Nutritional, CF related diabetes, cardiovascular, bone health and cancer screenings are reviewed. Mental health screening is affirmed and social determinants of health screening is encouraged. Specialized care is provided to people with cystic fibrosis (pwCF) by interdisciplinary teams nested within the CF Foundation's accredited care center network. This network allows for standardization of the care model, implementation of clinical care guidelines, efficient communication, and outcomes reporting. Recent developments have impacted this care model. Increased access to CFTR modulator therapies has improved overall health for many, although not all pwCF. The COVID-19 pandemic resulted in a rapid adoption of telemedicine and remote monitoring to ensure continuity of CF care. A collaboration of care providers, pwCF, and parent caregivers reevaluated key aspects of the current care model and considered potential modifications based on a widening range of needs. Available evidence was used to evaluate components of routine clinical practice and identify potential adaptations to care. The review included identification of patient characteristics warranting intensive monitoring, while embracing patient-centric care, and emphasizing the integration of telemedicine and at-home health technologies. Despite the changing landscape, the importance of the relationship between pwCF, their support system, and the care team was confirmed as a timeless and foundational aspect of the care model. Shared decision making, partnership, and coproduced care plans between pwCF and their CF care teams guide the best adaptations of the care model to support individual priorities and wellbeing. As health care advances and pwCF age, further research is needed to understand the impact of the care model on long-term health outcomes and to identify best practices that support pwCF to live longer healthier lives. [ABSTRACT FROM AUTHOR]

Details

Language :
English
ISSN :
15691993
Volume :
23
Issue :
6
Database :
Academic Search Index
Journal :
Journal of Cystic Fibrosis
Publication Type :
Academic Journal
Accession number :
181286570
Full Text :
https://doi.org/10.1016/j.jcf.2024.08.007