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Perspectives from people with CF, caregivers, and members of CF care teams
Tran, Q. T., Aliaj, E., Olmsted, M. G., Hempstead, S., Lomas, P., Brown , R. F., Flume, P., & Brown, W. (2024). Adapting the cystic fibrosis care model: Perspectives from people with CF, caregivers, and members of CF care teams. Journal of Cystic Fibrosis. Advance online publication. https://doi.org/10.1016/j.jcf.2024.09.002
Background: Rapidly emerging clinical trends offer the opportunity to amend guidance on issues pertaining to CF care delivery. A national survey was conducted to gather perspectives on CF care including potential adaptations to the care model to best meet the needs of this population. Methods: A survey instrument was developed to capture perspectives on CF care. People with CF (pwCF), including those post lung transplant, caregivers and care teams were surveyed. Descriptive statistics were calculated to characterize respondents and responses. Results: In-person, routine visits with the CF care teams were valued by survey respondents. However, reduced in-person visit frequency from the standard three-month interval was supported for individuals in a stable state of health. This was particularly true for pwCF ages two or older and on a modulator. Lung function, pulmonary exacerbation frequency, and transition periods were noted to influence preference for visit frequency. Integrating telehealth with remote moni
