Urinary incontinence in systemic sclerosis: a prospective multicentre cohort study

Investigate the natural history of urinary incontinence (UI) in systemic sclerosis (SSc) and assess its impact on quality of life (QoL). A longitudinal, international observational study followed 189 patients with SSc for a median duration of 5 years (IQR: 4.8–5.3). Presence, subtype and severity of UI, hospital admission and QoL were assessed using serial self-administered questionnaires. Mortality data came from national death registries. Multilevel mixed-effect logistic regressions explored factors associated with UI. Cox models adjusted the effects of UI on hospitalization and death for age, sex and subtype of SSc. Mean annual rates of new-onset UI and remission were 16.3% (95%CI 8.3%–24.2%) and 20.8% (95%CI 12.6–29.1), respectively. Among UI patients, 57.9% (95%CI 51.8–64.0) changed from one UI subtype to another. Between annual questionnaires, the severity of UI was the same in 51.1% (95%CI 40.8–61.4), milder or resolved in 35.2% (95%CI 25.3–44.9), and worse in 13.8% (95%CI 6.7–20.9). Anti-centromere antibodies, digestive symptoms, sex, age, neurological or urological comorbidities, diuretics and puffy fingers were all associated with UI. The two strongest predictors of UI and UI subtypes were a recent UI episode and the subtype of previous leakage episodes. UI at inclusion was not associated with hospital admission (adjusted HR: 1.86; 95%CI 0.88–3.93), time to death (aHR: 0.84; 95%CI 0.41–1.73) or change in QoL over time. Self-reported UI among SSc patients is highly dynamic: it waxes and wanes, changing from one subtype to another over time. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s00296-022-05178-1.