Urological Manifestations of Stevens–Johnson Syndrome/Toxic Epidermal Necrolysis and Their Management: A Scoping Review

Background/Objectives: Stevens–Johnson Syndrome (SJS) and toxic epidermal necrolysis (TEN) are rare, potentially fatal immunological conditions that affect cutaneous and mucosal surfaces and have the potential to involve the genitourinary tract. While genital involvement is common, urological manifestations are under-recognised clinically and there is a paucity of clear, evidence-based management pathways specific to urological manifestations of SJS/TEN. To map the spectrum of urological manifestations of SJS/TEN, to describe the short- and long-term outcomes of these manifestations, and to synthesise management and prevention strategies to inform clinical practice. Methods: This was a scoping review conducted in accordance with the Preferred Reporting Items for Systematic reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR) guideline. Data sources: Medline and PubMed articles published in English with publication date up to December 2025. Study selection: Eligible studies included case reports, case series, observational studies, clinical guidelines, and review articles describing urological manifestations, outcomes, management, or prevention strategies for patients with SJS/TEN. Articles limited to renal or isolated gynaecological involvement were excluded. Data extraction and synthesis: Articles were screened independently by two reviewers using a pre-defined data extraction template covering four domains: urological manifestations, outcomes and sequelae, management strategies, and prevention strategies. This criterion was refined after a pilot of 20 studies. Discrepancies were resolved by consensus with a third reviewer. Formal risk-of-bias assessment was not performed, consistent with scoping review methodology. Results: One hundred and four studies published between 1987 and 2025 were included in this review. Selected articles included case reports (n = 63), retrospective cohort studies (n = 23), prospective studies (n = 2), guidelines (n = 5), and summary articles (n = 11). Reported urological involvement ranged from genital cutaneous and mucosal disease including erosions, adhesions, and balanitis to urethral manifestations such as urethritis, stenosis, and strictures, as well as scarce upper urinary tract involvement including ureteric stricture and ureteric mucosal sloughing. While some manifestations resolved with supportive care, others progressed to chronic sequelae including persistent urethral strictures, voiding dysfunction, sexual dysfunction, recurrent infection, and in rare cases, obstructive uropathy. A multidisciplinary approach was recommended for all patients with SJS/TEN. Urological management centred around early and repeated urogenital examination, manual lysis of adhesions, urinary catheterisation, and timely intervention for urethral or ureteric obstruction. Long-term urological follow-up of 12 months was recommended for patients with significant urogenital involvement. Conclusions: Urological manifestations of SJS/TEN are diverse, clinically significant, and frequently under-recognised. Early urological involvement, systematic genital and urinary tract assessment, and proactive preventative measures may reduce long-term morbidity. This review provides a comprehensive synthesis of knowledge and recommendations to support urologists’ role in multidisciplinary care of patients with this pathology. This review also highlights the need for prospective research to guide further evidence-based management of urological complications of SJS/TEN.