The effect of the COVID-19 pandemic on quality of life of adults with cystic fibrosis

ABSTRACT

Objectives: The effect of the COVID-19 pandemic on the quality of life (QOL) of people with cystic fibrosis (pwcf) remains unclear. This study investigated the change in QOL, measured by the CFQ-R, in adult pwcf prior to and during the COVID-19 pandemic. Methods: The CFQ-R scores of 88 adult pwcf completed at two routine clinic appointments (one prior to first COVID-19 case in Wales 28/2/20 and one post) were retrospectively reviewed. Any change in CFTR modulator therapy between these dates was recorded along with demographics, FEV1% and BMI. Results: 88 (52 male, 36 female) with mean age, FEV1% and BMI of 32.2 years, 61.6% and 22.7 kg/m2 respectively had two consecutive CFQ-R results in the above time frame. Overall, mean social domain scores significantly declined (60.4 to 54.2 p < 0.001) and mean emotion scores fell from 69.3 to 65.9 (p = 0.07). Results did not vary between males and females. 59/88 had a change in modulator status during this period, mainly commencing Symkevi® or triple modulator therapy, and this group experienced a significant increase in FEV1% (p < 0.01) and BMI (p = 0.02) and a statistically significant improvement in every domain of the CFQ-R except emotion, eating, digestion and social. Their mean social score dropped significantly 59.5 to 54.2 (p = 0.018). Of the 29 pwcf with no change in modulator status, there was no significant change in FEV1% or BMI. Mean emotion domain scores, which assesses feelings of being sad, useless, lonely and difficulty making future plans, significantly worsened from 78.1 to 70.6 (p = 0.018). Mean social scores decreased from 62.1 to 54.2 (p = 0.037). Conclusion: This is the first study looking at QOL during COVID-19 in pwcf. During the COVID-19 pandemic there have been developments in access to highly effective modulators, but despite improvements in FEV1%, BMI and many CFQ-R domains suggesting improved health, emotion and social domain scores fell. This is likely to reflect the effect of the COVID-19 pandemic.