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.

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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

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article

The Impact of Informal Caregiving on Patient-Reported Outcomes, Psychological Well-Being and Quality of Life in Inflammatory Bowel Disease: A Systematic Review

Alessio Lo Cascio, Valeria Amatucci, S. Amato, Fabrizio Benedetti et al.
Nursing Reports
Inflammatory Bowel Disease
article

The Impact of Informal Caregiving on Patient-Reported Outcomes, Psychological Well-Being and Quality of Life in Inflammatory Bowel Disease: A Systematic Review

Alessio Lo Cascio, Valeria Amatucci, S. Amato, Fabrizio Benedetti, Daniele Napolitano, Giulia Imperatori
article en

Abstract

<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.

Nursing ReportsVol. 16(3)
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)
Università degli Studi di Roma Tor Vergata
Reduced inequalities
Openalex Percentile: Top 23%
Inflammatory Bowel Disease
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