Optimally managed patients with neurogenic or non-neurogenic urinary retention utilize intermittent self-catheterization (ISC) for bladder emptying. Although ISC is the gold standard for managing chronic urinary retention (1), little is known about the patients’ actual experience and quality of life (QoL), as prior research is limited to small, community-based studies performed outside of the United Sates (US). Our objective was to better understand patient practices with and attitudes towards daily ISC in a US population by interviewing patients who have been performing ISC for at least 6 months. We used a validated ISC related QoL questionnaire to determine ease of use, discreteness, difficulty with catheterization, and psychological well-being considerations with ISC. Results may assist patients, clinicians, and manufacturers in improving QoL in patients who use ISC for bladder emptying.

This is a cross-sectional, multi-centric, clinical study of adult men and women performing ISC was conducted in six distinct clinical sites including urology practices and rehabilitation centers in the US. Eligible patients were 18 years or older and had been independently performing ISC for at least 6 months. Patients who were non-English speaking or could not independently complete the questionnaires were excluded. Data collected from the participant included demographics, catheter/product choice, catheterization position, frequency of use, and length of time performing ISC. Medical history   related to lower urinary tract dysfunction and presence of urinary tract infections (UTIs) was collected from the patient’s medical records. Specifics on self-catheterization were obtained using a general ISC habit questionnaire and a validated questionnaire aimed at assessing QoL, the Intermittent Self-Catheterization Questionnaire (ISC-Q) (2). Herein, we present findings from the ISC-Q, a 24-item questionnaire with 4 domains: Ease of use, Convenience, Discreetness, and Psychological well-being. The ISC-Q was scored according to the manual with responses graded on a scale from 0-4 with higher score corresponding to greater satisfaction. The aggregate scores were then averaged for each question, each domain, and the entire questionnaire and multiplied by 25 to put the satisfaction score on a 100-point scale.

A detailed breakdown of results can be found in the associated tables. A total of 200 participants were recruited from six sites; 70% were male and 73.5% were Caucasian. Nearly 90% of patients were performing ISC for 1 year or more, and nearly 49% were performing ISC for 5 years or more. More than 50% of participants had a diagnosis of urinary retention as a result of a spinal cord injury. One-hundred eighty-four participants (92%) reported using a catheter that they disposed of after a single use. Of the 16 participants (8%) that reused the same catheter for multiple catheterizations, 5 (31%) reported reusing the same catheter 1-5 times, 4 (25%) reused the same catheter 6-10 times, and 7 (44%) reused the same catheter >10 times. One-hundred twenty-four participants (62%) used a 14 Fr size catheter with 66 (33%) reported using a Coudė tip. The majority did not require assistance with catheterization (181, 91%). Only 71 (30%) of patients reported never experiencing urine leakage between catheterizations, with 29 (19%) reporting they experienced leakage “every day” and 100 (50%) reporting that they experienced leakage “sometimes/rarely”.  Eighty-four (44%) of participant’s records experienced a UTI treated with antibiotic in the six months prior to enrollment in the study, while 20 (10%) patient records did not address UTI occurrence.  As a catheter-associated UTI prevention method, it is recommended that patients perform “no-touch” catheterization; 68 (34%) patients; however, reported “touching the part of the catheter that is being inserted” (Table 1). 
Results from the ISC-Q showed that the majority of participants indicated that catheters are easy to use, discreet, and that they have confidence with their ability to perform ISC. Some participants report challenges with carrying enough catheters when traveling, a feeling of self-consciousness due to the need for ISC, and concern about the risk of long-term problems from ISC. The calculated satisfaction scores for each domain were as follows: 82.0 for ease of use, 60.0 for convenience, 75.4 for discreetness, and 64.3 for psychological well-being. The overall satisfaction score was 70.4 (Table 2).

In this large, cross-sectional, multi-centric trial of ISC practices in urology practices and rehabilitation centers in the US, variability in catheter type, frequency of ISC per day and UTI experience was noted. Ninety percent of participants had been performing ISC for > 1 year, demonstrating the chronicity of the conditions that commonly lead to ISC and thus the importance of understanding the QoL impact of ISC on patients. The ISC-Q questionnaire results indicate that participants in this study had little difficulty with catheterization and were able to be discreet about their use. Further study is needed on methods to improve convenience while traveling for ISC patients as well as understanding long term sequelae and implications of ISC. UTIs were common in participants performing ISC and may contribute to concerns about long term implications of ISC. Confidence in the ability to use the catheter is important for all ISC patients and may be the results of successful patient education as well as catheter design.

We believe this is the first survey of its kind to be done in patients performing ISC in urology and rehabilitation centers in the US that attempted to quantify multiple components of the patient experience when performing ISC using the validated ISC-Q.  Studying patient experience with ISC has the ability to facilitate QoL improvements for this large population who, for the most part, will use ISC dependent for life.

Drake, M.J., Apostolidis, A., Cocci, A., Emmanuel, A., Gajewski, J.B., Harrison, S.C., … Wyndaele, J.J. (2016). Neurogenic lower urinary tract dysfunction: Clinical management recommendations of the Neurologic Incontinence committee of the fifth International Consultation on Incontinence 2013. Neurourol Urodyn. 35(6):657-65. https://DOI: 10.1002/nau.23027. 2.
Pinder, B., Lloyd, A.J., Elwick, H., Denys, P., Marley, J., et al. (2012) Development and psychometric validation of the intermittent self-catheterization questionnaire. Clin Ther 34: 2302-2313.