Guidelines

Urethral intermittent catheterisation in adults (2024)

13. PATIENT QUALITY OF LIFE (QOL)

Intermittent catheterisation (IC) is often followed by physical, psychological and emotional impairment of patients’ everyday life and perceived quality of life (QoL), and in many instances involves both partners, caregivers and families. [94, 136, 174]

Positive impact on patient QoL:

  • improvement of urinary symptoms
  • unbroken sleep
  • independency
  • more self-confidence
  • less urine incontinence
  • improved sexual health
  • less local peri-urethral infection, febrile episodes, stones, and deterioration of renal failure

Negative impact on patient QoL:

  • difficult to integrate in daily life (e.g., lack of public toilets, work environment, and holidays)
  • participation factors
  • preparation of IC
  • constrained by the need to plan convenient times
  • limited hand function (men)
  • inability to sit appropriately (women)
  • severe bowel dysfunction
  • urinary tract infection ≥ 4 per year
  • urethral stricture
  • dependence on caregiver
  • affects family and social life
  • can be painful
  • time-consuming, and having to watch the time (every 2–3 h)
  • fatigue

[58, 136, 175-178]

Effects of bladder management methods on QoL in patients with neurogenic bladder
Conservative bladder emptying methods are IC, bladder reflex triggering, indwelling catheter or suprapubic catheter. IC has a positive impact on urinary symptoms and QoL in patients with short- and long-term spinal cord injury (SCI). [2, 3, 178-180] However, a recent retrospective study showed conflicting results and reported that surgery and indwelling catheters can be superior to IC in reducing urinary symptoms in tetra- and paraplegic patients. [181]

Only a few studies have performed long-term follow-up of adherence and QoL. A recent study reported adherence of up to 84% after 1 year and significantly improved QoL in patients performing clean IC (CIC) compared to indwelling catheterisation. [174] This is supported in a recent review that reported an increase of 28% in Intermittent Self-Catheterisation Questionnaire (ISC-Q) scores in patients performing IC compared to other bladder management methods. [182] Other studies have shown that IC is very well tolerated and improves urinary-specific QoL measured in three domains: bother with limitations, fears, and feelings, as well as overall QoL. [177]

These findings are supported in a population-based study using data from the largest self-reported database of patients with multiple sclerosis (MS), worldwide, The North American Research Committee of Multiple Sclerosis (NARCOMS) Registry. [183] A total of 9397 MS patients responded (66% response rate) to a survey investigating the prevalence of urinary catheterisation and its impact on QoL, including positive versus negative responders. Significant disability defined by the Patient Determined Disease Steps (PDDS) score ≥ 3 (representing gait disability or worse), was reported by 65% of the respondents, and 29% of these patients reported moderate-to-severe bladder disability scores. In total, 12.8% of all respondents reported a current need of catheterisation, with IC being the most used method (62%). Among these patients, 61.5% reported a positive change in QoL. [183]

RecommendationLEGR
Educate patients and caregivers to use IC to improve long-term QoL in patents with neurogenic bladder [168]3A

Reasons for cessation of IC
Transition from IC to other less optimal bladder emptying strategies such as indwelling catheters is common, due to lack of adherence to IC, as shown in a population-based study among patients with SCI. [184] The most common reasons for discontinuing IC were inconvenience, urinary leakage and urinary tract infections (UTIs) in paraplegic patients. A regression analysis revealed that increased time since SCI was associated with worse bladder symptoms, ≥ 4 UTIs in a year were associated with worse satisfaction and feelings about bladder symptoms. Thus, paraplegic patients had lower QoL than tetraplegic patients, who had greater satisfaction and more positive feelings about bladder symptoms. [184] Thus, an individual approach balancing clinical complications with QoL concerns is recommended when exploring reasons for treatment transition and adherence for bladder management in patients with SCI. [136, 184]

RecommendationLEGR
Explore patients’ QoL and risk of complications to improve IC adherence [120, 169]3A

QoL and safety in patients performing IC with single or reusable catheters
A single-centre study evaluated the safety and QoL of single-use and reusable catheters. Single-use catheters improved QoL and were superior to reusable catheters with respect to colonisation by microorganisms and some with biofilm. [185] For this reason single-use catheters result in better health status as compared with reusable catheters. [186] Moreover, single-use catheters have significantly higher patient acceptance. [185, 187]

RecommendationLEGR
Recommend single-use catheters to promote patient QoL3A

Frequency
The number of times a day that patients carry out IC has major implications for QoL. Those who are catheterised twice daily are more able to develop a routine that does not require catheterisation outside the home. This avoids many of the difficulties described so far and allows them, in general, to carry out their normal activities unhindered. [174] QoL and long-term adherence to IC are improved with the use of catheters that are associated with reduced preparation time or fewer steps in preparation, lower UTI rate and less pain. [94, 187]

Sexuality and body image
Few studies have addressed the impact of IC on sexuality and body image. Several negative influences have been described in case reports.

One woman stated that CIC created a barrier between her and her husband because he resented having to perform CIC for her, and their sexual relationship had suffered because he feared hurting her. One young man commented that his personal sexual life virtually stopped. [135]

Performing self-catheterisation might negatively affect intimacy and sexuality, especially in patients aged < 65 years. Patients may avoid confronting (potential) partners with clean intermittent self-catheterisation and therefore skip one or more occasions when having dates or intimate encounters. [58]

RecommendationLEGR
Discuss sexuality and impact of IC as a part of patient assessment; if necessary, refer to a psychologist/sexologist4C