Patient reported outcome measures in intra-peritoneal adhesive disease: a scoping review

BACKGROUND: Intra-peritoneal adhesive disease (IPAD) can lead to debilitating symptoms including bowel obstruction, chronic abdominopelvic pain, and infertility. Standard tools to evaluate patient experiences for this disease process have not been described. This scoping review aims to (1) identify existing Patient Reported Outcome Measures (PROMs) related to IPAD and (2) evaluate the utility and quality of available IPAD-related PROMs, measured by predefined adhesive disease domains. METHODS: Systematic searches were completed in PubMed using terms specific to IPAD-related symptoms and Quality of Life (QoL) domains including chronic abdominopelvic pain, bowel obstruction and function, and psychological impact on QoL. PROMs that reported exclusively on QoL were excluded. PROM development setting, psychometrics, and inclusion of adhesive disease domains were compared. RESULTS: Of 3290 articles originally identified, 38 articles yielded 10 PROMs related to IPAD. Patient input was considered in 80% of PROM development and 60% of field testing. Reliability testing and construct validity was performed for 70% of IPAD-related PROMs. All 10 IPAD-related PROMs assessed symptoms and QoL domains (i.e. chronic abdominopelvic pain, bowel obstruction/dysfunction, and impact on QoL). No PROM specific to IPAD was identified. The Memorial Sloan Kettering Bowel Function Instrument (MSK-BFI) included the fewest (3/10) and the Small Bowel Obstruction Questionnaire (SBO-Q) covered the most IPAD-related domains (9/10). CONCLUSIONS: There is currently no IPAD-specific PROM, though the SBO-Q was identified as the most robust, as it addressed multiple symptom/QoL domains and underwent reliability/construct validity testing. Future directions include external validation of the SBO-Q in IPAD-relevant patient populations and further refinement of an IPAD-specific PROM with patient and expert input.