Work participation in inborn errors of immunity: The dual burden on patients and caregivers
Despite improved survival, occupational challenges in with inborn errors of immunity (IEI) patients and their families remain unmeasured. We conducted a nationwide cross-sectional survey promoted by AIP and ImmunITA, including 420 IEI adults and 110 caregivers, integrating occupational data with patient-reported outcome measures. Multivariable models assessed employment and productivity determinants. Overall, 67% of patients were employed, yet half reported reduced capacity, unsafe environments, limited career progression, and stigma. Unemployment was associated with female sex, disability, and lower education. Nondisclosure affected one-fourth of patients and one-fifth of caregivers. Work impairment reached 39%; absenteeism was driven by healthcare demands, while presenteeism was associated with disease burden, psychological distress, and immune dysregulation, but not the Ig administration route. Caregivers showed 34% work impairment, with absenteeism linked to care intensity and presenteeism to psychological distress, patient health, and child caregiving. Child caregivers had greater time demands and more part-time employment. In conclusion, IEI substantially impair work productivity, supporting integration of occupational needs into care to improve social inclusion.
Authors
- Isabella Quinti (ORCID: https://orcid.org/0000-0002-3328-7584)
- Alessandro Segato
- Mayla Sgrulletti (ORCID: https://orcid.org/0000-0002-7493-5226)
- Andrea Finocchi (ORCID: https://orcid.org/0000-0003-0958-8536)
- Federica Pulvirenti (ORCID: https://orcid.org/0000-0002-3466-9496)
- Rosa Angarano
- Marta Chiara Sircana (ORCID: https://orcid.org/0009-0006-5494-5255)
- Viviana Moschese (ORCID: https://orcid.org/0000-0001-7650-0632)
- Riccardo Scarpa (ORCID: https://orcid.org/0000-0002-1085-2333)
- Francesco Cinetto (ORCID: https://orcid.org/0000-0001-8486-5850)
- Caterina Cancrini (ORCID: https://orcid.org/0000-0001-8410-9617)
- Serena Serafino
- Alessandro Aiuti (ORCID: https://orcid.org/0000-0002-5398-1717)
- Beatrice Rivalta (ORCID: https://orcid.org/0000-0003-2199-289X)
- Cinzia Milito (ORCID: https://orcid.org/0000-0003-2581-9250)
- Klara Radović (ORCID: https://orcid.org/0000-0001-9662-9046)
- Filippo Cristoferi
- Clementina Canessa (ORCID: https://orcid.org/0000-0003-1169-4039)
- Emanuele Vivarelli (ORCID: https://orcid.org/0000-0001-5955-5076)
- Pietro Andrea Accardo
- Federica Barzaghi (ORCID: https://orcid.org/0000-0003-4498-1712)
- Giuliana Giardino (ORCID: https://orcid.org/0000-0002-0621-9527)
- Gloria Mantuano
- Giulia Di Colo
- Giuseppe Ienopoli
- Germano Sardella
- Marco Lecis (ORCID: https://orcid.org/0000-0002-9374-7343)
- Maria Giovanna Danieli (ORCID: https://orcid.org/0000-0003-2376-0291)
- Silvia Ricci (ORCID: https://orcid.org/0000-0001-7140-1694)
- Silvia Casati
- Francesca Carfora
- Baldassarre Martire
- Giovanna Fabio
- Lorenzo Lodi
- Maria Pia Cicalese
- Maria Carrabba
- ImmunITA
- AIP
Institutions
- Vita-Salute San Raffaele University (IT)
- Policlinico Umberto I (IT)
- Unitelma Sapienza University (IT)
- Policlinico Tor Vergata (IT)
- University of Bari Aldo Moro (IT)
- Sapienza University of Rome (IT)
Publication Details
- Journal
- Journal of Human Immunity
- Published
- 2026-10-22
- DOI
- https://doi.org/10.70962/jhi.20260077
- Primary Topic
- Immunodeficiency and Autoimmune Disorders
- Type
- article
- Field-Weighted Citation Impact
- 0.00