The coronavirus disease 2019 (COVID-19) pandemic negatively affected the mental health of people living with rare diseases, a new study published in Molecular Genetics and Metabolism Reports found. This was especially the case for people affected by inherited metabolic diseases such as long chain fatty acid oxidation disorder (LCFAOD), even though these patients showed a better quality of life.
“Young age would behave as a protective factor on the perception of [quality of life],” the researchers wrote. “Further studies and new analyses in larger samples and in other pandemic moments would be needed.”
Read more about LCFAOD diagnosis
To assess quality of life and mental health during the COVID-19 pandemic in patients affected by rare diseases, whose care needs are already challenging, a team of researchers from Spain conducted a prospective case-control study. Their special focus was on inherited metabolic disorders.
The team analyzed 459 patients, 53 of whom had an inherited metabolic disorder, 4 being LCFAOD. They also examined 446 healthy volunteers who acted as controls.
They used age-appropriate validated scales to assess the quality of life and mental health of the participants, who completed the questionnaires between July 2020 and September 2021.
They found that the pandemic had a greater psychological effect on children and adults with inherited metabolic disorders than the healthy volunteers.
In addition, only adults with inherited metabolic disorders had a worse quality of life due to the pandemic; however, this was better than the quality of life of patients with other neurological or genetic diseases, or other rare diseases.
The alterations in mental status in all patient groups were similar during the pandemic.
LCFAOD is an inherited metabolic disorder affecting fat metabolism. There are 6 different types of LCFAOD depending on the enzyme involved in the beta-oxidation of long-chain fatty acids that is defective.
Rovira-Remisa MM, Moreira M, Ventura PS, et al. Impact of COVID19 pandemic on patients with rare diseases in Spain, with a special focus on inherited metabolic diseases. Mol Genet Metab Rep. Published online March 6, 2023. doi:10.1016/j.ymgmr.2023.100962