Long-term indwelling catheter (IDC) use is associated with a wide range of catheter-related problems and concerns that may affect patients' daily lives. The International Consultation on Incontinence Questionnaire for Long-Term Catheter quality of life (ICIQ-LTCqol) is a patient-reported outcome measure that captures catheter-related quality of life in long-term catheter users [1]. Earlier studies using this questionnaire have primarily focused on symptom prevalence, while the burden patients experience from their symptoms remains poorly characterized [2, 3]. This study aimed to describe this patient-reported burden in a large cohort of long-term catheter users, and to quantify the relationship with symptom prevalence.

A cross-sectional study was conducted among Dutch adults with an IDC (either urethral or suprapubic, ≥3 months). Patients were recruited via email through the customer database of MediReva, a national catheter supplier. All participants completed the Dutch ICIQ-LTCqol[BM1.1][LR1.2], which includes eleven items on the prevalence of catheter-related symptoms, with corresponding burden questions (“How much does this bother you?”). Symptom presence was reported by patients across ordinal response categories (never/occasionally/sometimes/most of the time/always). For each symptom, the percentage of patients per response category was presented. Associated burden (0-10 numeric rating scale) was reported as median with interquartile range (IQR). Associations between symptom prevalence and reported burden were assessed per item using Spearman’s correlation coefficients, given the ordinal nature of the data and non-normal distribution of burden scores.

A total of 4,882 patients were approached, of whom 594 completed the questionnaire (mean age 75 years; 79% male; 49% suprapubic catheter). Pain, discomfort or irritation, fear of catheter leakage, and fear of catheter blockage all had the highest median burden score (4, IQR 1-7), reported at least occasionally by 78.1%, 76.1%, and 73.2% of patients, respectively. Urinary tract infections, bladder spasms, and concerns about odor were also frequently reported present (59–73%), yet with less median burden (3). Shame regarding having a catheter was less prevalent (40.4%) and associated with a low median burden (1, IQ 0-5). The item on sexual activity was completed by only a subset of respondents (n=264, 44%) due to response options indicating non-applicability (n=281) or unwillingness to respond (n=49). Among these patients, median reported burden was low (1.5, IQR 0-7). 
Correlations between symptom occurrence and perceived burden varied substantially across symptoms. Strong correlations were observed for pain, bladder spasms, odor, and shame (Spearman’s ρ 0.80-0.84). Moderate correlations were found for fear of leakage, fear of blockage, urinary tract infections, the use of pads, and sexual activity (ρ 0.49-0.75).

Physical symptoms and catheter-related anxiety, particularly pain, fear of leakage and fear of blockage, dominated patient-reported burden over concerns related to social functioning, such as shame and sexual activity. For directly experienced symptoms such as pain and bladder spasms, symptom frequency was strongly correlated to the perceived burden. 
Despite being among the symptoms with highest burden, fear of leakage and blockage showed relatively lower frequency-burden correlations, indicating that high distress can occur even when concerns are reported infrequently. Notably, shame showed a strong frequency-burden correlation despite a low median burden score, suggesting that although shame is reported as minimally burdensome, its perceived burden correlates strongly with how often it is experienced. The wide interquartile ranges across nearly all burden items further underscore the heterogeneity of this population.

Physical symptoms and catheter-related anxiety were associated with the highest patient-reported burden in this large cohort of long-term catheter users. Spearman’s correlations between symptom frequency and burden varied across items, demonstrating that frequency alone may be an insufficient proxy for patient distress. Assessing burden alongside symptom frequency may help better align clinical care with what matters most to patients.

Cotterill N, Fowler S, Avery M, et al. Development and psychometric evaluation of the ICIQ-LTCQoL. Neurourology and Urodynamics. 2016;35(3):423–428.
Christiaans CHH, van Veen FEE, Scheepe JR, Blok BFM. Patient satisfaction, quality of life, and catheter-related complications in long-term urinary catheter users: a nationwide survey. World J Urol. 2025 Aug 1;43(1):470.
Youssef N, Shepherd A, Best C, Hagen S, Mackay W, Waddell D, El Sebaee H (2023) The quality of life of patients living with a urinary catheter and its associated factors: A Cross-Sectional study in Egypt. Healthc (Basel).;11(16).

Continence 19S (2026) 102667
DOI: 10.1016/j.cont.2026.102667