Urinary incontinence (UI) is common and substantially affects quality of life of affected individuals [1]. Patient-reported outcome measures (PROMs) can improve evaluation of UI treatment by capturing outcomes that matter to patients. However, it remains unclear whether PROMs used in adult UI were developed with sufficient patient involvement, are accessible to diverse patient groups, and provide interpretable thresholds such as minimal important differences (MIDs). We aimed to map: patient involvement during PROM development, accessibility features including validated translations, readability and pictorial formats, and the availability of a minimal clinically important difference, or related interpretive thresholds.

We performed a scoping review in accordance with PRISMA-ScR methodology [2]. MEDLINE, Embase and CINAHL were searched from database inception to 18 June 2025 for original studies describing the development of UI-related PROMs for adults aged 18 years and older. Instruments addressing closely related UI symptom constructs were also eligible. Records were deduplicated and screened by two reviewers using ASReview-assisted active learning, with predefined stopping criteria. Citation searching was additionally performed to identify original PROM development papers and subsequent studies reporting translations or MID-related evidence. Data extraction focused on patient involvement, accessibility indicators, validated language versions, pictorial or visual adaptations, and MID evidence.

Database searches yielded 19,555 records; after removal of 5,968 duplicates, 13,587 records were screened using ASReview. Reviewers manually screened at least 25% of records, applying a stopping rule of 100 consecutive irrelevant records; 10% were independently screened by a second reviewer for quality control. In total, 141 articles describing 143 PROMs met the inclusion criteria. Patient involvement during development was reported for 83/143 instruments (58.0%), most commonly during item generation (58/143, 40.3%). Validated translations were identified for 73/143 instruments (51.0%). Only 11/143 instruments (7.7%) reported formal readability assessment, and 4/143 offered a pictorial or visual format. An MID or comparable interpretive threshold was established for 24/143 instruments (16.8%).

Although many UI PROMs are available, major gaps remain in patient-centred development, accessibility and score interpretability. Patient involvement was inconsistent, echoing broader concerns from PROM methodology literature that patient input is not uniformly embedded in instrument development [3]. Accessibility also remains uneven, with limited readability testing and very few visual tools despite the importance of inclusive measurement across literacy and language groups. Finally, the low proportion of instruments with an MID limits interpretation of change scores in both research and clinical practice.

Many PROMs for adult UI were not developed with clearly documented patient involvement, lack adequate accessibility features, and do not provide an established MID. Future PROM development in UI should prioritise patient co-creation, systematic cultural and readability adaptation, and robust derivation of interpretable change thresholds to strengthen patient-centred continence care and research.

Pizzol D, Demurtas J, Celotto S, Maggi S, Smith L, Angiolelli G, et al. Urinary incontinence and quality of life: a systematic review and meta-analysis 2021;33:25–35. https://doi.org/10.1007/s40520-020-01712-y.
Tricco AC, Lillie E, Zarin W, O’Brien KK, Colquhoun H, Levac D, et al. PRISMA Extension for Scoping Reviews (PRISMA-ScR): Checklist and Explanation 2018;169:467–73. https://doi.org/10.7326/M18-0850.
Wiering B, de Boer D, Delnoij D. Patient involvement in the development of patient-reported outcome measures: a scoping review 2017;20:11–23. https://doi.org/10.1111/hex.12442.