The database search identified 3,501 results. After removing duplicates and screening titles and abstracts, 81 articles were identified, out of which 17 met the inclusion criteria. One case report article was also included. Additional records were identified based on the references of included articles, out of which four articles were included in the findings (Fig. 2).
The themes that emerged from the literature were related to the relationship between UTIs and health, adherence, technique, and catheter choice. These findings are described below.
3.1.1 Effect of UTIs on Health
UTIs affect the overall health and energy, they require treatment and may lead to hospitalisation [16, 18]. Additionally, frequent UTIs can impact the work life, social life, and intimate relationships, eventually leading to social isolation and low user satisfaction [19–21]. However, the perception of UTIs varies among individuals from something inherent to IC to a cause of relapses of Multiple Sclerosis . Self-monitoring for UTIs can be empowering, giving a feeling of control over maintaining one’s own health, while other users experience anxiety over the uncertainty of the timing and severity of the infection [16, 22].
With time, users start understanding their body and recognising UTI symptoms and the need for treatment [19, 23]. However, it may be difficult to distinguish UTI symptoms from those related to comorbidities or age. Notably, users may describe their symptoms using a language that does not match the clinical terms. Therefore, the lack of a user-friendly list of signs and symptoms may hinder UTI diagnosis and management .
3.1.2 Impact of Non-Adherence on UTIs
Lack of adherence is associated with increased risk of UTIs . Adherence is not only related to knowledge and the ability to perform IC, but also to feelings and fears . Users’ decisions to adhere to IC can be motivated by “psychosocial desires”, such as a need to avoid embarrassing incontinence episodes and to feel confident . For some users, IC is a reminder of the impairment and thus, resisting adherence is “an act of resisting abnormality” . This is an act with immediate positive psychological effects, but long-term complications . Challenges and changes in the IC technique, anatomical barriers, complications such as pain, bleeding, and discomfort, as well as the dependence on assistance, obstruct the recommended IC frequency [25–28]. Fears of infection, pain and self-harm and the struggle to adapt new routines into those practiced for years also interfere with adherence . Adherence may also be challenged when UTIs occur early in the life with IC, as users may doubt the effectiveness of this method . Finally, performing IC away from home is troublesome. It may require catheterisation from a different position [25, 26], while public toilets are seen as a cause of UTI due to lack of sanitary, accessible bathrooms [1, 12, 16, 25, 27, 29].
IC users develop self-help methods and strategies that give them control over their everyday life, and promote feelings of normalisation and independence . Routines, rituals and workaround strategies help maintain a regular catheterisation schedule [16, 29]. This schedule, along with a practice of increasing fluid intake after observing UTI symptoms were viewed as preventive strategies against UTIs . However, some strategies can also adversely impact the risk of UTIs. For example, users may reduce fluid intake during a day away from home or when they are in the hospital to avoid the need for toileting assistance from the staff [16, 23, 30].
3.1.3 Impact of Technique and Education on UTIs
Some users have physical barriers to handling the catheter properly, for example, reduced dexterity or spasticity [1, 15, 30, 31]. The technique can also be challenging for female users because the urethra is less accessible [1, 21, 27, 31]. However, education on IC is also often insufficient, predisposing users to incorrect technique and misconceptions around the benefits, functionality, and complications of IC [24, 32]. Lack of knowledge was particularly noted in terms of anatomy, disease, symptoms, and aetiology of UTIs, while an array of negative feelings including anxiety, fear, shock, depression, and stigma were associated with the IC training [24, 31–34].
As a result, users may leave the training session uncertain of the technique and even learn about their anatomy by trial and error [23, 28]. They are nonetheless hesitant to contact HCPs with questions, indicating that long-term IC users may not have received up-to-date education on best practices [12, 22]. Users valued follow up care as it could help them maintain the correct technique and felt that information on hygiene and UTI prevention would help them avoid complications [28, 34].
3.1.4 Impact of Catheters on UTIs
Access to catheters and the opportunity to try different products varies from country to country [22, 23, 25]. The potential for re-using catheters, which is dependent on the user’s country of residence, was primarily associated with worry about UTIs, as the single-use method was viewed as cleaner and more sterile .
When given a choice, different preferences on the catheter features were mentioned. For example, users talked about choosing between a narrower diameter to minimise discomfort or a wider diameter that reduced voiding time, while the length affected whether the bladder could be fully drained and if the catheter could reach the toilet. Preferences concerning the rigidity of the catheter were balanced between control of navigation and damage to the urethra, whereas lubrication influenced the ease of insertion and handling . When away from home, using an alternative catheter such as a pre-lubricated one was mentioned . Overall, trust in the product design and quality was highlighted and catheter properties that reduced discomfort and the perceived risk of trauma were favoured [18, 26].
3.2 Nurse Advisory Board Input
Advisory Board nurses found that the most relevant UTI risk factors to assess were related to the user’s general health condition, their adherence, technique, and the catheter type used. They highlighted that before evaluating risk factors, they would confirm whether the person has a UTI that requires treatment. The questions the nurses proposed were subsequently organised into groups assessing the following: UTI confirmation, risk factors related to health, adherence, technique, and catheter and, finally, supporting questions to conclude the consultation. The findings from the Advisory Board meetings are outlined below.
3.2.1 UTI Confirmation
Before initiating treatment, nurses agreed on the importance of confirming whether the user has a UTI, based on the guidelines, to avoid the risk of overtreatment [4, 36]. Therefore, diagnostic tests could be supplemented by questions on experienced symptoms and how users recognise a UTI.
Important insights can be collected during this step, that could guide the risk factor assessment. These concern the history of UTIs, including recurrency of UTIs and antibiotic resistance, as well as patterns and triggers of UTIs that users may have already identified or suspect. HCPs should also understand the user’s challenges, as well as their fears, and the psychological impact UTIs have on the user’s life.
An overall deterioration in the user’s health condition was recognised as a potential reason behind UTIs. Furthermore, ageing and menopause may affect the urinary tract and lead to more UTIs and symptoms. With the user’s specific diagnosis and demographics as a starting point, the Advisory Boards recommended exploring health changes or medication that may influence the bladder and bowel, such as medication for diabetes, high bladder pressure and, naturally, bladder and bowel medication. Furthermore, bowel function should be examined in terms of frequency and stool type, as should incontinence or constipation problems, which increase the risk of UTI. The bowel situation can be mapped by using the Neurogenic Bowel Dysfunction (NBD) score , the Bristol stool scale  and the MENTOR tool . Additionally, the wipe direction should be assessed, especially in persons with limited dexterity.
The discussion also centred around the importance of users acknowledging the benefits of IC and how adherence to the IC protocol prevents UTIs. It was recommended to ask the user how IC fits into their life, discuss opportunities for the future, explore their practices for maintaining a healthy bladder and try to understand underlying beliefs or misconceptions about IC and UTIs. When experiencing complications like soreness or a UTI, it is critical to solve these problems, while emphasising the importance of not switching to another method or reducing the catheterisation frequency.
The 3-day bladder diary was considered an insightful method used both by urologists and nurses to adjust the catheterisation frequency and fluid intake . For example, low water consumption may be observed during specific time points, while incontinence episodes may indicate that the recommended bladder capacity is exceeded between catheterisations. The Advisory Boards recognised that the diary is cumbersome for users but acknowledged that even an incomplete diary can provide insights. However, if a diary is completely unavailable, the HCP can instead ask about factors such as fluid intake, urine output, IC frequency and the colour of the urine. For users who void spontaneously in addition to performing IC, the total volume of urine output should be considered.
3.2.4 IC Technique
The Advisory Boards noted that the IC process varies between users, depending on, among other possibilities, sex, catheter type (e.g., single or re-use), the recommended technique (no-touch or clean) and the catheterisation position (sitting on toilet, in a wheelchair or lying down). It is therefore important to assess all the steps from preparation to insertion and withdrawal of the catheter. Along with asking questions, they emphasised that observing the user perform IC can reveal discrepancies between understanding and practice and can also highlight unspoken issues that could otherwise remain unnoticed.
Following the complete catheterisation process, attention points start with hygiene practices related to cleaning hands and the genital area, and the hygienic handling of the catheter when opening the package and preparing it for use. The lubrication step should be observed, if relevant. It is also important to take note of whether the catheter touches surfaces, the clothes, or the body, if the meatus becomes well visible and if the catheter is inserted far enough. Other important aspects to observe include the positioning of the catheter, and whether complete bladder emptying is ensured, for example by withdrawing the catheter in small steps, or repositioning the catheter or the body.
Reviewing these steps allows the HCP to assess if the technique recommended to the user is followed correctly and if an adjustment is needed to reduce the risk of UTI. Prior to correcting the technique, asking users about their perceived difficulties with IC empowers them to reflect and take more control in determining the steps they could improve with their technique.
3.2.5 Catheter Choice
When selecting a catheter, the nurses remarked that it should fit into the user’s personal situation and preferences, while different types of catheters may be preferred for different situations.
The type and size of the catheter are among the most important determinants of functionality. Examples mentioned included catheters requiring lubrication or activation by the users which must be properly prepared, while catheters that dry out quickly may not be suitable for users that require a longer time to catheterise. Symptoms such as pain, discomfort and bleeding could be indicators that the catheter coating or design are not optimal for the user.
3.2.6 Support for Users
Follow up support is essential to ensure users are comfortable with the technique and are up to date with best practices. It was therefore proposed that users be asked what information and support they would need to better handle and prevent UTIs. HCPs could thus ensure users receive the correct information on UTIs and could have an opportunity to offer other relevant health or lifestyle advice.
3.3 Tool Format
The Nurse Advisory Boards highlighted that the questions in the tool should be phrased in such a way that they do not worry the user but, at the same time, succeed in obtaining relevant information. Questions should therefore be open-ended yet straightforward. It is also crucial that HCPs have background knowledge about the tool’s questions so that they can explain why obtaining this information is important.
Based on the collected input, the designed tool consists of three elements (Fig. 3):
1. The HCP guide, which contains a structured list of questions, organised in six sections: UTI Confirmation, Health, Adherence, Technique, Catheter and Support (Fig. 4). Each question is accompanied by guidance text, that can support the HCP, as well as relevant follow-up actions.
2. A Dialogue Board intended to engage the user. The front side is divided into the same six sections as above and contains headers that correspond to each question. The back side of the board features illustrations and explanations that include an adapted list of UTI signs and symptoms and a VAS scale can help users describe their symptoms. Anatomic illustrations visualising the bowel’s influence on the bladder and the need to reposition to avoid residual urine are also included to support users’ understanding and training. A simple example outlines the calculation of the recommended catheterisation frequency and, finally, a list of available catheter designs can be a way to include the user in the selection of an appropriate product. Overall, the dialogue board supports the HCP in explaining some concepts to the user, while also helping the user to follow the conversation, understand the relevance of UTI risk factors and take an active role in their management.
3. A personal form containing sheets featuring the dialogue board with space for note taking can be used to record information relevant to the individual user which they can take home.