The Impact of Informal Caregiving on Patient-Reported Outcomes, Psychological Well-Being and Quality of Life in Inflammatory Bowel Disease: A Systematic Review
<b>Background/Objectives</b>: While caregiver burden in Inflammatory Bowel Disease (IBD) is well documented, the association between informal support and patient-reported outcomes (PROs), particularly health-related quality of life (QoL) and psychological well-being, remains underexplored. This systematic review synthesizes evidence on the association of informal caregiving on patient-reported QoL and psychosocial outcomes and maps the available evidence on clinical outcomes. <b>Methods</b>: Following international reporting guidelines and prospective protocol registration, a systematic search was conducted across five electronic databases between May and October 2025. Observational studies in adults with IBD assessing informal support and patient-reported or psychosocial outcomes were included. Owing to substantial heterogeneity in constructs and outcome measures, results were synthesised using a structured Synthesis Without Meta-analysis (SWiM) approach. Methodological quality was assessed using standardised critical appraisal checklists. <b>Results</b>: Six cross-sectional studies involving 1036 patients and 417 informal caregivers met the inclusion criteria. All studies reported a positive direction of association between higher levels or better quality of informal caregiver support and improved patient-reported QoL. Several studies identified psychological and relational factors, such as lower patient psychological distress and caregiver-related positive feelings and caring ability, as mechanisms statistically associated with this relationship. <b>Conclusions</b>: Available cross-sectional evidence suggests a positive association between informal support and patient-reported QoL/psychological outcomes in IBD, but causality cannot be inferred. Priorities include longitudinal dyadic studies and caregiver-inclusive interventions, alongside standardised definitions and measures of support.
Authors
- Alessio Lo Cascio (ORCID: https://orcid.org/0000-0001-5581-4114)
- Valeria Amatucci
- S. Amato
- Fabrizio Benedetti
- Daniele Napolitano
- Giulia Imperatori
Institutions
- University of Rome Tor Vergata (IT)
- University of Perugia (IT)
- Santa Maria Nuova Hospital (IT)
- Policlinico Umberto I (IT)
- Agostino Gemelli University Polyclinic (IT)
- Azienda Ospedaliera San Camillo-Forlanini (IT)
- Policlinico Tor Vergata (IT)
- La Maddalena (IT)
Publication Details
- Journal
- Nursing Reports
- Published
- 2026-03-13
- DOI
- https://doi.org/10.3390/nursrep16030097
- Primary Topic
- Inflammatory Bowel Disease
- Type
- article
- Field-Weighted Citation Impact
- 0.00
Funders
- Università degli Studi di Roma Tor Vergata