Comparisons of the personal well-being score (PWS) and health-related quality of life for people with cystic fibrosis before and during the COVID-19 pandemic

Background Well-being scores are used across Europe; the personal wellbeing score (PWS) is a 4-question survey used by the Office of National Statistics (ONS) in the UK annually on the general population. It asks about satisfaction, happiness, anxiety and feeling worthwhile, scored from 0–10. The COVID-19 pandemic impacted many; especially those with cystic fibrosis who were at high-risk and asked to isolate. This study aimed to evaluate the differences in well-being and health-related quality of life (HRQoL) pre and during the pandemic. Method A UK observational pilot study collected data (pre-pandemic, 2016–18) from 5 adult CF centres. The during-pandemic cohort was collected from a single adult centre (2020–21). The surveys contained 3 measures; PWS and 2 HRQoL measures: EQ-5D-5L & the CF Quality of Life (CFQoL). Results The pre (n = 66) and during-pandemic (n = 213) cohorts had 47% vs. 53.1% females; a median age of 35.5 vs. 36.5 yrs, respectively. No significant difference was observed between both cohorts for PWS (table). EQ-5D-5L’s index score, Visual Analogue Scale, and CFQoL domains also were not different, except for the CFQoL’s social functioning (75.8 vs. 49.4, p < 0.001). General population PWS shown in table. PWS “Pre” pandemic (n = 66) UK population* (n = 148 600) “During” pandemic (n = 213) UK population** (n = 110 800) Satisfaction 7.1 7.6 7 7.5 Worthwhile 7.6 7.8 7.4 7.7 Happiness 6.8 7.5 7 7.4 Anxiety 4.1 2.8 4.2 3.1 * UK population ONS between 2016 and 17. ** UK population ONS between 2020 and 21. Conclusion The three measures showed no difference in PWS & HRQoL from pre to during-pandemic, except the CFQoL’s social functioning domain, the drop may have been attributable to the external factor of “lockdown,” rather than an individual’s health. Approval for CFTR modulators came in Aug 2020 and may have influenced the 3 measures. Although at both time points the CF population showed lower domain scores than the general population and higher anxiety