The patient perspective in benign foregut surgery guidelines: bridging evidence, values, and clinical decision-making.

BACKGROUND

Patient values influence preference-sensitive decisions in benign foregut (upper gastrointestinal) surgery, but their incorporation into guideline development is unclear. This systematic review evaluated how patient perspectives are included in clinical practice guidelines (CPGs) and whether involvement is associated with quality.

METHODS

Databases and society websites were searched for CPGs addressing endoscopic or surgical management of benign foregut disease from January 2010 to March 2026. Two reviewers screened records, extracted data, mapped involvement across the 10-stage Armstrong framework, and assessed quality using AGREE II.

RESULTS

Twenty-six CPGs were included. All used evidence-grading methods, but only 8 (31%) reported direct patient involvement. Six additional CPGs (23%) considered patient values indirectly through literature review and clinician assumptions. No CPG published before 2018 reported direct involvement. Among patient-involved CPGs, engagement most often occurred during recommendation development (8/8), evidence interpretation (5/8), and question or outcome formulation (5/8). None reported patient involvement in dissemination, implementation, updating, or evaluation of engagement. Later publication year was associated with direct involvement (OR 1.54 per year). In unadjusted analyses patient-involved CPGs had higher AGREE II scores for clarity, applicability, and editorial independence, but this did not remain statistically significant in sensitivity analyses restricting publication year and methodologist involvement.

CONCLUSIONS

Direct patient involvement remains uncommon and concentrated in recommendation development rather than the entirety of guideline development. Foregut-related surgical societies should combine patient-preference evidence with transparently reported patient partnership from priority setting through implementation and updating.