{
  "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.",
  "abstract_shown": true,
  "affiliations": [
    "Reference Centre for Primary Immune Deficiencies, Sapienza University Hospital Policlinico Umberto I , Rome, Italy.",
    "Pediatric Immunopathology and Allergology Unit, Policlinico Tor Vergata, University of Rome Tor Vergata, Rome, Italy.",
    "Department of Transitional and Precision Medicine, Sapienza University of Rome, Viale dell'Università 37, Rome, Italy.",
    "Department of Pediatrics, University of Bari \"Aldo Moro,\" Bari, Italy.",
    "Department of Molecular Medicine, Sapienza University of Rome, Rome, Italy.",
    "IRCCS San Raffaele Hospital and Vita-Salute San Raffaele University , Milan, Italy.",
    "Sapienza Foundation, Sapienza University of Rome , Rome, Italy."
  ],
  "article_type": "research article",
  "arxiv": null,
  "author_total": 11,
  "authors": [
    {
      "affs": [
        0
      ],
      "name": "Federica Pulvirenti",
      "orcid": "0000-0002-3466-9496"
    },
    {
      "affs": [
        1
      ],
      "name": "Mayla Sgrulletti",
      "orcid": "0000-0002-7493-5226"
    },
    {
      "affs": [
        0,
        2
      ],
      "name": "Klara Radovic",
      "orcid": "0000-0001-9662-9046"
    },
    {
      "affs": [
        1
      ],
      "name": "Marco Lecis",
      "orcid": "0000-0002-9374-7343"
    },
    {
      "affs": [
        1,
        3
      ],
      "name": "Gloria Mantuano",
      "orcid": "0009-0008-5925-145X"
    },
    {
      "affs": [
        4
      ],
      "name": "Cinzia Milito",
      "orcid": "0000-0003-2581-9250"
    },
    {
      "affs": [
        5
      ],
      "name": "Alessandro Aiuti",
      "orcid": "0000-0002-5398-1717"
    },
    {
      "affs": [
        6
      ],
      "name": "Isabella Quinti",
      "orcid": "0000-0002-3328-7584"
    },
    {
      "affs": [
        1
      ],
      "name": "Viviana Moschese",
      "orcid": "0000-0001-7650-0632"
    },
    {
      "name": "AIP"
    },
    {
      "name": "ImmunITA"
    }
  ],
  "bibtex": "https://research.draconitic.com/paper/cwbm66bcqnfch.bib",
  "cited_by": 0,
  "doi": "10.70962/jhi.20260077",
  "fulltext_url": "https://europepmc.org/articles/PMC13689748",
  "id": "cwbm66bcqnfch",
  "issns": [
    "3065-8993"
  ],
  "landing_url": "https://europepmc.org/article/MED/42911122",
  "language": "eng",
  "licence": "CC-BY",
  "licence_label": "CC BY",
  "licence_source": "article",
  "licence_url": "https://creativecommons.org/licenses/by/4.0/",
  "metadata_licence": null,
  "native_subjects": [
    [
      "openalex",
      "2403|Immunodeficiency and Autoimmune Disorders"
    ]
  ],
  "openalex": "W7223175400",
  "pdf_url": "https://europepmc.org/articles/PMC13689748?pdf=render",
  "pmcid": "PMC13689748",
  "pmid": "42911122",
  "published": "2026-10-22",
  "publisher": null,
  "ris": "https://research.draconitic.com/paper/cwbm66bcqnfch.ris",
  "sources": [
    {
      "first_seen": "2026-10-30T12:20:10Z",
      "native_id": "MED:42911122",
      "source": "europepmc",
      "url": "https://europepmc.org/article/MED/42911122"
    }
  ],
  "subjects": [
    {
      "field": "biology",
      "origin": "openalex:2403|Immunodeficiency and Autoimmune Disorders",
      "subfield": "immunology"
    }
  ],
  "title": "Work participation in inborn errors of immunity: The dual burden on patients and caregivers.",
  "title_text": "Work participation in inborn errors of immunity: The dual burden on patients and caregivers.",
  "type": "peer-reviewed",
  "updated_at": "2026-10-30T12:20:10Z",
  "url": "https://research.draconitic.com/paper/cwbm66bcqnfch",
  "venue": "Journal of human immunity",
  "versions": []
}