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

## TL;DR

This review finds that informal caregiving is linked to better quality of life and psychological outcomes for inflammatory bowel disease patients, but more research is needed to confirm these relationships.

## Contribution

This is the first systematic review to synthesize evidence on the association between informal caregiving and patient-reported outcomes in inflammatory bowel disease.

## Key findings

- Higher or better quality informal caregiver support is associated with improved patient-reported quality of life in IBD.
- Psychological and relational factors like lower patient distress and caregiver positive feelings are linked to better outcomes.
- Current evidence is cross-sectional, so causality cannot be determined.

## Abstract

Background/Objectives: 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. Methods: 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. Results: 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. Conclusions: 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.