Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2025 Aug;156(2):449-462.
doi: 10.1016/j.jaci.2025.04.023. Epub 2025 Apr 30.

Long-term effects of COVID-19 in patients with primary immunodeficiency: An IPOPI worldwide survey

Leanne P M van Leeuwen  1 , Samya Van Coillie  2 , Johan Prévot  2 , Jose Drabwell  2 , Nizar Mahlaoui  3 , Silvia Sánchez-Ramón  4 , M Cecilia Poli  5 , Isabelle Meyts  6 , Adli Ali  7 , David M Lowe  8 , Virgil A S H Dalm  9 , Martine Pergent  10
Affiliations

Long-term effects of COVID-19 in patients with primary immunodeficiency: An IPOPI worldwide survey

Leanne P M van Leeuwen et al. J Allergy Clin Immunol. 2025 Aug.

Abstract

Background: During the coronavirus disease 2019 (COVID-19) pandemic, many individuals developed persistent symptoms after COVID-19. The data on these long-term effects in the primary immunodeficiency (PID) community are limited.

Objective: This study aimed to understand long-term symptoms after COVID-19 in patients with PID, focusing on prevalence, risk factors, viral persistence, and the impact of COVID-19 on their health-related quality of life (HR-QoL).

Methods: A global, multilingual web-based survey was conducted by the International Patient Organization for Primary Immunodeficiencies between July and October 2023. Self-reported data on demographics, PID diagnosis, comorbidities, COVID-19, and HR-QoL were collected using the EuroQol 5-Dimensions 5-Level (EQ-5D-5L) survey and analyzed.

Results: Of the 1160 respondents, 25% reported persistent symptoms after COVID-19. Common symptoms included fatigue, headache, and nasal symptoms. Compared with those respondents without persistent symptoms, those with persistent symptoms after COVID-19 reported a significantly higher prevalence of symptoms across all categories-systemic, pain, cardiopulmonary, gastrointestinal, neurologic, psychological, neurocognitive, and others-except for upper respiratory tract symptoms. Independent risk factors for development of persistent symptoms included female sex, asthma, neurologic diseases, and predominantly antibody deficiency other than common variable immunodeficiency or agammaglobulinemia. In 30% of patients with persistent symptoms, viral clearance was not achieved within 1 month. During the pandemic, HR-QoL declined across all PID categories-even in those without COVID-19, but especially in those with a symptom duration of more than 6 months.

Conclusion: Persistent symptoms after COVID-19 are prevalent among patients with PID, with various risk factors identified. The COVID-19 pandemic had a considerable impact on the HR-QoL of patients with PID regardless of COVID-19 status.

Keywords: COVID-19; HR-QoL; PID; health-related quality of life; long COVID; patient-reported; persistent symptoms; primary immunodeficiencies; survey; viral persistence.

PubMed Disclaimer

Conflict of interest statement

Disclosure statement Disclosure of potential conflict of interest: N. Mahlaoui, S. Sánchez-Ramón, C. Poli, I. Meyts, A. Ali, and V. A. S. H. Dalm are members of the medical advisory panel (MAP) of IPOPI. I. Meyts is a senior clinical investigator at Research Foundation - Flanders (FWO Vlaanderen). I. Meyts has received a research grant from CSL Behring (paid to Katholieke Universiteit Leuven) and consulting fees from Boehringer-Ingelheim and Takeda (all paid to Katholieke Universiteit Leuven Research and Development). D. M. Lowe has received personal fees from Gilead for an educational video and from Merck for a roundtable discussion; speaker fees from Biotest, Takeda, and AstraZeneca; and support from Octapharma to attend a conference. In addition, D. M. Lowe holds research grants from the Medical Research Council (United Kingdom), the National Institute for Health and Care Research (United Kingdom), LifeArc, GlaxoSmithKline, and Bristol-Myers Squibb, and he has received consultancy fees from GSK (paid to his institution). S. Sánchez-Ramón has served on advisory boards and as a speaker for Grifols, CSL Behring, Takeda, Octapharma, Biotest, and Biogen. V. A. S. H. Dalm has received fees for advisory boards from Takeda, GSK, Pharming, and CSL Behring and speakers fees from Takeda, GSK, Pharming, CSL Behring, AstraZeneca, and Janssen & Janssen NL; in addition, he holds research grants from ZonMw (The Netherlands) and Horizon2020 (European Union). The rest of the authors declare that they have no relevant conflicts of interestg.