Hypothesis / aims of study
Background:
Intermittent self‑catheterization (ISC) is the recommended method for bladder emptying in individuals with chronic urinary retention. However, long‑term adherence and quality of life (QoL) may be influenced by usability, convenience, and psychosocial factors. Despite widespread use, there are limited real‑world data describing how individuals experience ISC in daily life. Patient‑reported outcomes can provide valuable insights into the lived experiences, characteristics, and catheterization practices of individuals who perform ISC and may help inform more patient‑centered care.
Aims:
To evaluate self‑reported quality of life, ease of use, convenience, discreetness, psychological wellbeing, and perceived health status among individuals performing intermittent self‑catheterization using data from the Continence Care Registry (ConCaRe™).
Study design, materials and methods
Methodology:
This descriptive analysis used baseline self‑reported data from participants enrolled in ConCaRe™, a multinational, longitudinal registry of individuals performing ISC. Data were collected through electronic questionnaires and included the Intermittent Self‑Catheterization Questionnaire (ISC‑Q) and the EuroQoL‑5D visual analogue scale (EQ‑5D VAS). Outcomes included overall ISC‑related QoL, ISC‑Q domain scores for ease of use, convenience, discreetness, and psychological wellbeing, and general health status. Results were summarized for participants in the United States (n=168; 113 males, 55 females), the United Kingdom (n=86; 44 males, 42 females), and Canada (n=58; 32 males, 26 females), with additional analysis stratification by gender.
Interpretation of results
Interpretation of results:
Across regions, mean ISC‑related QoL scores were highest in the United States (US), followed by the United Kingdom (UK) and Canada. Ease of use scores were consistently high across all regions, indicating generally favorable experiences with catheter handling. Discreetness scores were also high, particularly in the US and UK, suggesting that most participants were able to use their catheters discreetly in daily life. These findings align with prior patient‑reported evidence from the PRICE study, which demonstrated that individuals generally experienced little difficulty with catheterization and were able to use their catheters discreetly. ¹
In contrast, convenience scores were lower across all countries, highlighting persistent challenges related to carrying, storing, and disposing of catheters during daily activities. European Association of Urology Nurses (EAUN) guidelines emphasize that convenience and speed of use to support adherence, ² suggesting an opportunity to improve catheter and packaging design to better patient needs. Psychological wellbeing scores were moderate overall, underscoring the ongoing emotional and psychosocial burden associated with ISC. Prior studies have shown that fear, embarrassment, and reduced self‑esteem may negatively affect catheter use and confidence, reinforcing the importance of addressing these issues in clinical practice. ³
Gender‑based analyses showed similar patterns across regions, with females generally reporting slightly higher discreetness and convenience scores than males, while ease of use remained high across genders.
General health status, measured by the EQ‑5D VAS, varied by region. Average health ratings were highest in the US and Canada; however, despite generally positive perceptions of overall health, participants in Canada reported lower ISC‑related QoL scores, suggesting that ISC may remain disruptive and burdensome even among individuals who otherwise perceive their health as moderate to good.