OBJECTIVES: Long COVID is expected to be the most significant and enduring impact of the COVID-19 pandemic. This study provides evidence of the impact of long COVID symptoms on EQ-5D-5L, change in this impact and explores any mediators of the impact.

METHODS: Mātauranga Raranga | Long COVID Registry Aotearoa collects data on individuals who self-report symptoms of long COVID. Health-related quality-of-life (HRQoL) is collected using the EQ-5D-5L, using recall for pre-COVID HRQoL and today (with long COVID symptoms), with monthly follow-up. The registry is underpinned by a Tiriti o Waitangi Framework and partnership model of practice which seeks to avoid deficit framing. Separate analyses of Māori and non-Māori explore the mean EQ-5D-5L values and profiles. Quality adjusted life years (QALYs) are estimated using the date of the index infection and data collected at various follow-up points. Regression analyses are used to understand the determinants of EQ-5D-5L and changes over time.

RESULTS: Analyses of collected data up to 30 September 2023 have formed the bases of an interim report (8.3% Māori; 91.7% non-Māori). Pre-COVID (baseline) and today EQ-5D-5L had a mean value of 0.853 (0.892) and 0.484 (0.533) respectively for Māori (non-Māori), with the difference in EQ-5D-5L (and EQ-VAS) being significant. The average time with symptoms of long COVID for Māori (non-Māori) participants is 367 days (336 days). Estimated QALYs lost due to long COVID is 0.41 (0.30) QALYs for Māori (non-Māori). Further analyses are ongoing, including with a larger and more representative sample, as the registry continues to recruit individuals with long COVID symptoms.

CONCLUSIONS: This study shows that the impact of long COVID symptoms on HRQoL is similar to that of individuals with MS and cancer. Further research is warranted to understand the determinants of this burden and whether time or treatment mediates the impact.