Work participation in inborn errors of immunity: The dual burden on patients and caregivers.
7 affiliations
- 1Reference Centre for Primary Immune Deficiencies, Sapienza University Hospital Policlinico Umberto I , Rome, Italy.
- 2Pediatric Immunopathology and Allergology Unit, Policlinico Tor Vergata, University of Rome Tor Vergata, Rome, Italy.
- 3Department of Transitional and Precision Medicine, Sapienza University of Rome, Viale dell'Università 37, Rome, Italy.
- 4Department of Pediatrics, University of Bari "Aldo Moro," Bari, Italy.
- 5Department of Molecular Medicine, Sapienza University of Rome, Rome, Italy.
- 6IRCCS San Raffaele Hospital and Vita-Salute San Raffaele University , Milan, Italy.
- 7Sapienza Foundation, Sapienza University of Rome , Rome, Italy.
Abstract
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.
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BibTeX
@article{pulvirenti2026work,
title = {{Work participation in inborn errors of immunity: The dual burden on patients and caregivers.}},
author = {Federica Pulvirenti and Mayla Sgrulletti and Klara Radovic and Marco Lecis and Gloria Mantuano and Cinzia Milito and Alessandro Aiuti and Isabella Quinti and Viviana Moschese and AIP and ImmunITA},
journal = {Journal of human immunity},
year = {2026},
month = oct,
doi = {10.70962/jhi.20260077},
url = {https://europepmc.org/article/MED/42911122},
note = {CC BY},
}
RIS
TY - JOUR
TI - Work participation in inborn errors of immunity: The dual burden on patients and caregivers.
AU - Federica Pulvirenti
AU - Mayla Sgrulletti
AU - Klara Radovic
AU - Marco Lecis
AU - Gloria Mantuano
AU - Cinzia Milito
AU - Alessandro Aiuti
AU - Isabella Quinti
AU - Viviana Moschese
AU - AIP
AU - ImmunITA
PY - 2026
DA - 2026/10/22
JO - Journal of human immunity
DO - 10.70962/jhi.20260077
UR - https://europepmc.org/article/MED/42911122
AB - 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.
SN - 3065-8993
ER -