Patient-reported outcome measures (PROMs) are playing an increasingly important role in the evaluation of treatment outcomes. They provide valuable insights into patients' experiences and requirements, but are often developed without direct patient participation. The Urethral Stricture Symptom and Impact Measure (USSIM) (Figure 1) is a PROM developed in the United States in close collaboration with patients with urethral stricture disease [1]. Currently, there is no validated tool in the Netherlands for objectively assessing treatment outcomes in cases of urethral strictures. The further development of the Dutch version of this PROM could make a significant contribution to patient-centered care. The present study translated this questionnaire into the Dutch-language DUSSIM (Figure 2) and retrospectively correlated its scores with clinical parameters following urethral stricture surgery.

For linguistic validation, in accordance with current guidelines, the questionnaire was translated from English to Dutch and back into English by professional translators for linguistic validation, after which the results were reviewed by three physicians. The DUSSIM was then administered via interviews to both patients and a control group; two weeks later, the participants completed the DUSSIM again, thereby confirming the validation results of the original instrument.

Subsequently, a retrospective, multicenter study was conducted in which patients who underwent a Sachse urethrotomy or urethraplasty between 2019 and 2024 were contacted and asked to complete the DUSSIM (see Figure). Uroflowmetry data were collected, as well as information on intermittent self-dilatation. 
DUSSIM items were grouped into six domains: domain 1 (D1), all voiding-related questions (questions 2–9), subdivided into domain 2 (D2) subjective voiding (questions 2, 4, 9), and domain 3 (D3) objective voiding (questions 3, 5–8). Domain 4 (D4) assessed sexuality (questions 10–11), domain 5 (D5) quality of life (question 1) and domain 6 (D6) future perspective (question 12).
Statistical analyses, including independent T-tests and Pearson correlation analyses (p<0.05), were performed using SPSS version 29.

The DUSSIM was sent to 439 patients, of whom 149 responded: 122 had undergone a Sachse urethrotomy (median age 73 years (SD 12.4 years)) and 27 had undergone an urethroplasty (median age 61 years (SD 12.9 years)).

No significant differences were observed in DUSSIM domain scores between the two treatment groups (all p≥0.24).

All DUSSIM domains, except the sexuality-domain, showed significantly higher scores with higher Qmax values in the flowmetry (correlations 0.26, 0.31, 0.30, 0.38, and 0.25, respectively), consistent with better treatment outcomes.

When adequate urinary flow was achieved through self-dilatation, all DUSSIM domain scores remained unaffected; however, sexuality was negatively impacted (correlation −0.19, p<0.05).

Younger men scored higher on D1, D3, and D4 (correlations −0.21, −0.19, and −0.33, respectively; all p<0.05), which may be explained by a higher rate of urethroplasty and fewer comorbidities, such as prostatic enlargement or cardiovascular disease, at younger age.

The DUSSIM appears to be a reliable instrument for assessing outcome parameters considered important by both clinicians and patients. In addition, it provides insights that are important for shared decision-making regarding optimal treatment. Prospective validation is being conducted.

For the first time, PROMs are available for urethral strictures that were developed with patient input. Our study takes the first steps toward validating the Dutch version (DUSSIM) in which the PROMs demonstrates adequate correlation with clinical parameters in this retrospective study. As with the original version, its reliability and applicability will be further tested prospectively.

Voelzke BB, Edwards TC, Vanni AJ, Myers JB, Rourke K, Erickson BA, Broghammer JB, Elliott SP, Buckly JC, Lindekugel G, Breyer BN. Urethral Stricture Symptom and Impact Measure Validation Study. Urology. 2025 May;199:162-170. doi: 10.1016/j.urology.2025.02.027. Epub 2025 Mar 3. PMID: 40043959.