Abstract
PURPOSE: Informal carers of people with cystic fibrosis (PwCF) play a critical role in care provision, yet the impact of caregiving on their quality of life (QoL) remains underexplored. We aimed to assess the effect of caregiver burden on the quality of life of informal caregivers of people with cystic fibrosis in the UK. METHODS: We conducted a cross-sectional online survey study administering a structured questionnaire with four validated measures (EQ-5D-5L, CarerQol-7D, ReQoL-10 and ASCOT-Carer). We used a carer-reported severity scale of cystic fibrosis to define severity groups. Statistical methods included descriptive analyses and ordinary least squares (OLS) regression to examine the association between carer utility and CF severity. RESULTS: We find significant decrements in carers' quality of life due to their care burden, with the most affected dimensions being mental health (79% of carers reported some anxiety or depression) and social health (60% reported negative impacts on social contact). We find this QoL to be significantly worse for those caring for people with severe CF compared to those with mild CF (-0.03 to -0.1), for the majority of the measures used (EQ-5D, ReQoL-10 and CarerQol-7D). CONCLUSION: Our paper shows the negative impact on QoL for carers of PwCF, correlated with increasing CF severity due to their carer duties, and the negative impacts on their various health aspects, especially mental health. This indicates the importance of including carer QoL and additional measures to fully capture burden in health technology assessments (HTA) for CF.