The epicenter of COVID-19 outbreak and quality of life (QoL) of patients with inborn errors of immunity (IEI): A sad reality

ABSTRACT

Background: The world is facing one of the worst pandemics in history. Its social, economic and psychological consequences will leave profound marks on society. This study evaluated the QoL of patients with IEI at an immunology referral centre, during the SARS-CoV-2 pandemic. Method: A prospective, single-center study with an adapted questionnaire was applied in two moments of the pandemic from April to June 2020, and again in March 2021. IEI patients over 18 years old and the caregivers of children under this age answered it online. This questionnaire was adapted from the Portuguese version of the shortened WHO QoL-brief QoL assessment instrument (questions 1,2,4,5 e 26) and the 10-item version of the Perceived Stress Scale (questions 1,2 e 3), taking into account the past four weeks. Results: In the first three months analyzed (April to June/2020), 123/160 questionnaires were answered 44.7% by caregivers and 55.3% by patients themselves. The children were 12-18 years old and adults were 18-45 years old. 91.1% of the patients have been receiving intravenous immunoglobulin replacement. 84.5% of the patients have already been hospitalized, and 38.2% of them in the intensive care unit at least once. All participants have heard of SARS-CoV-2 and 91% were afraid of being infected with the new virus. 81 patients (66%) reported good QoL prior to the pandemic and, after its onset, this percentage dropped to 27%. In March 2021, with the exponential increase in cases and deaths in Brazil, the questionnaire was reapplied, and 99/160 were answered, 52.4% by patients. The majority (72.6%) are between 18-45 years old, and only 8% of the responders reported good QoL. Everyone fears the coronavirus. Conclusion: Currently, Brazil is the epicenter of COVID-19 outbreak on the planet. In recent weeks, the number of new cases and deaths has grown wildly. Furthermore, IEI patients in Brazil had to deal with the lack of immunoglobulin supply throughout 2020, and until now. In the face of so much adversity, there is an urgent need to think about strategies to improve the QoL of these patients. This is one of the alerts of World primary immunodeficiencies (PI) Week 2021.