Comfort discussing financial challenges and accessing resources in cystic fibrosis care among people with cystic fibrosis and their care partners: A cross-sectional survey study

Background People with cystic fibrosis (PwCF) face considerable financial burdens. PwCF who are most likely to make financial and healthcare tradeoffs, had the lowest comfort discussing financial issues with their CF team. The association of comfort with financial discussions and accessing resources is unknown. Our study assessed the relationship between comfort discussing financial issues with the CF care team and PwCF accessing resources. Methods We evaluated responses of adults with CF, parents/guardians of children with CF, and spouses/partners/guardians of PwCF from the 2024 COST-CF survey. We examined financial discussion frequency, resource usage, barriers, and perceptions of accessing resources as a function of comfort discussing financial issues with the care team. Results 875 respondents reported their comfort with financial discussions, with 51% feeling comfortable/very comfortable, 38% slightly/somewhat comfortable, and 11% not at all comfortable. Overall, 50% had cost discussions with their CF care team that cost of care presented a financial burden in the last 12 months. Most respondents (69%) experienced at least 1 barrier to accessing financial resources. Those reporting lower comfort with discussions generally endorsed higher need (e.g., understanding and planning for healthcare costs), lower confidence in getting support to prevent/reduce cost burden, and more barriers to accessing care (e.g., did not know where to find financial resources). Conclusions Our results show patient/family comfort level with financial discussions is related to levels of need, confidence in getting support, and barriers to accessing care. The CF care team should be proactive in assessing financial needs and connecting PwCF to resources.