Peer-reviewed article
Work participation in inborn errors of immunity: The dual burden on patients and caregivers.
Pulvirenti F, Sgrulletti M, Radovic K, Lecis M, Mantuano G et al. ·
Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001This study examines employment and work participation among adults with inborn errors of immunity (IEI) and their caregivers. The research finds that while 67% of patients are employed, many experience reduced work capacity, unsafe conditions, and stigma. Work impairment affects 39% of patients and 34% of caregivers, driven by healthcare demands and disease burden.
Key points
- 67% of IEI patients were employed, but half reported reduced capacity at work
- 39% of patients experienced work impairment; unemployment associated with female sex, disability, and lower education
- Absenteeism in patients driven by healthcare demands; presenteeism associated with disease burden and psychological distress
- Caregivers showed 34% work impairment, with child caregivers facing greater time demands
- One-fourth of patients and one-fifth of caregivers did not disclose their condition at work
Limitations
This study focuses on adults with inborn errors of immunity and their caregivers, not children. While caregivers may include parents of children with IEI, the report does not evaluate outcomes specific to child well-being or child development.
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.