Introduction

Neurogenic lower urinary tract dysfunction (NLUTD) or “neurogenic bladder” reflects a constellation of urinary symptoms and chronic conditions resulting from neurologic dysfunction of the central and peripheral nervous systems associated with congenital or acquired conditions [1]. The most frequently studied NLUTD-associated conditions include spinal cord injury (SCI), multiple sclerosis (MS), cerebrovascular disease or stroke, and congenital conditions such as spina bifida (SB). In NLUTD, urinary dysfunction varies according to the extent and location of the neurologic defect. Presentations are heterogeneous and can include bladder overactivity, incontinence, urgency, retention, and poor emptying [1]. Management of NLUTD also involves a wide range of strategies, which are sometimes invasive, and may impact patients’ activities of daily living. Such strategies may include bladder catheterization, surgical interventions, pharmacologic therapy, or a combination of all the above. In addition, comorbid conditions (e.g., neurogenic bowel dysfunction) and physical limitations (e.g., paralysis) can compound the psychological burden of NLUTD and affect symptom management.

Urinary and bowel function are among top priorities in the SCI literature for functional recovery [2], and urinary complications are the second leading reason for hospitalization among individuals with SCI [3]. Neurogenic lower urinary tract dysfunction thus has a profound effect on a patient’s psychological and psychosocial functioning and quality of life (QOL). Despite the inherent potential for significant psychosocial burden with NLUTD, surprisingly few studies have examined the psychological and social experiences of individuals with NLUTD [4••, 5,6,7]. One factor for this may be that there are few patient-reported measures developed and validated specifically for NLUTD [8,9,10].

This review focuses on NLUTD from a biopsychosocial lens; therefore, aside from biological symptoms, we will consider how psychological states and sociocultural environment can reflect an individual’s experience of NLUTD [11]. Herein, we describe the available findings in recent literature on psychological distress in NLUTD across the domains of stress, anxiety, depression, and coping strategies and review the effect of symptoms across psychosocial domains, including interpersonal relationships and QOL.

Psychological Factors Associated with Neurogenic Lower Urinary Tract Dysfunction

Psychological Distress

Understanding psychological distress in chronic urologic conditions is a growing area of research, although it remains relatively new in NLUTD. Recent studies highlight the increased rates of psychological comorbidity in conditions such as interstitial cystitis/bladder pain syndrome (IC/BPS) and overactive bladder (OAB) [5, 12]. Some studies have demonstrated that patients with NLUTD experience elevated psychological distress, including increased social isolation and reduced self-esteem [13]. When left unaddressed, psychological distress can consequentially shape patient perceptions and result in poorer rehabilitation outcomes and treatment adherence from the underlying neurologic condition [13].

In NLUTD, distress levels can also be affected by ongoing symptom management and caretaking dynamics. For example, researchers have observed a high prevalence of depression, anxiety, shame, and embarrassment in patients using clean intermittent catheterization (CIC) for their urologic management of NLUTD [14, 15]. As patients with NLUTD may require assistance from others to perform CIC, this can induce shame-based beliefs about self and negatively impact interpersonal relationships, ability to cope, and mood [16].

Anxiety

While the literature is limited, recent studies have demonstrated the increased prevalence of anxiety, the interaction between anxiety and NLUTD symptoms, and its consequences on QOL. A qualitative analysis of women’s experiences in living NLUTD after SCI (n = 50) revealed extensive anxiety and worry about the potential for accidents (both bladder and bowel) and lack of access to bathrooms [16]. This increased anxiety, in turn, leads to a gradual reduction in social interactions and career opportunities, which can subsequently increase anxiety, creating a challenging psychological cycle. Patients reported feelings of shame, loss of dignity, and low self-esteem from increased dependency needs. Similarly, another qualitative study exploring the management of urinary symptoms in patients with MS (n = 18) demonstrated significant psychological consequences (e.g., worry, stress, embarrassment, lowered self-esteem/confidence, fear of worsening urinary symptoms) affecting aspects of daily life such as sleep quality, employment, and social relationships [17].

A more recent and larger cross-sectional survey-based study of 195 adult patients with SB [18] found 47% of patients suffered from anxiety. Furthermore, significant associations were found between anxiety and higher neurogenic bladder symptoms scores, younger age, and lower physical functioning. The authors hypothesized that the association with age may be due to younger adults having fewer skills, resources, and interpersonal relationships which may contribute to increased anxiety in this population.

Depression

Although previous research has established an association between lower urinary tract symptoms (LUTS) and depression, the causal pathway is still unclear and presumably bidirectional, involving interrelated psychological and physiologic pathways [6, 19]. Qualitative studies of SCI patients have demonstrated that the prevalence of major depression ranges from 9.8 to 37.5% [20]. Furthermore, untreated depression in patients with SCI has significant consequences to patient morbidity and mortality. Specifically, depression can increase hospitalization rates [21], substance dependence [22], decrease functional gains [23], decrease life expectancy [24], and increase all-cause mortality [25] and suicide rates [26, 27].

Recently, Sakakibara et al. (2021) conducted a retrospective investigation of bladder, bowel, and sexual symptoms in Parkinson’s disease (PD) patients with and without depression (n = 267) and found that sensation of post-void residual was significantly higher in the depression group than the non-depression group [28]. The authors suggest that the presence of comorbid depression may therefore influence bladder and bowel symptoms in PD patients. A qualitative study examining the cognitive, affective, and behavioral dimensions of NLUTD in male veterans with PD found that embarrassment (e.g., due to leakage, wet pants, and smell) and bother (e.g., due to unpredictability of urine leakage) were primary sources of emotional distress in this population [29]. One participant described feeling depressed as a result of unpredictable voiding during intimacy, and several men described avoiding activities and relationships that once gave them joy in response to affective distress.

In the previously discussed cross-sectional study of SB patients with the goal of identifying demographic and clinical characteristics associated with depression and anxiety, the authors found 48% of patients suffered from depression, with 39% of patients experiencing comorbid anxiety and depression [18]. Furthermore, depression was associated with increased neurogenic bladder symptom severity and lower household education. Finally, a recent cross-sectional study of young male SCI patients examined depression in erectile dysfunction (ED) [30]. Study findings revealed an overall rate of depression of 30%, with a higher prevalence in patients with ED (43%) over those without (12%). These results suggest that psychological well-being in SCI patients is likely a complex interplay between physical and social factors.

Existing studies demonstrate that increased urinary symptoms may reflect more severe neurological disease, pain, social, and/or functional limitations that therefore contribute to overall poorer psychological health in NLUTD. In turn, poor psychological health may also aggravate urinary symptoms, making targets for intervention unclear. Overall, study findings highlight the unmet need for targeted screening and interventions for psychological distress in NLUTD.

Psychological Distress in Children and Adolescents

Children and adolescents with NLUTD represent a distinct population of patients with unique psychological needs and struggles – many related to caregiving dynamics with adult parents. Psychological factors affecting younger patients have been specifically examined in a small body of literature. A cross-sectional investigation of anxiety and depression in patients (n = 22) between the ages of 10 and 19 with NLUTD dysfunction secondary to SB found that 27% scored in the abnormal range of anxiety on a subscale of the Hospital Anxiety and Depression Scale (cut off ≥8/21) [31]. Interestingly, the prevalence of anxiety was even higher among caregivers (49%) in this same study, underscoring the potential value of therapeutic interventions addressing the psychosocial burden for both patients and families affected by NLUTD [32]. Importantly, a cross-sectional study on psychological stress and non-neurogenic LUTS in children and adolescents demonstrates that caregivers often use punishment (physically or verbally) as a consequence of urinary symptoms [33]. The perception of caregivers may be that urologic symptoms are intentional; therefore, there may be a lack of understanding and patience in coping. Hence, it is possible that psychological distress associated with NLUTD in young people may manifest as anxiety in response to parental misunderstanding. The study by Braga et al. also demonstrated that there is increased psychological stress associated with more severe LUTS [33]. While this study specifically excluded patients with neurologic conditions, it can be inferred that some similar urinary symptoms associated with increased anxiety in the study including dysuria, urinary urgency, and incontinence may also apply to patients with NLUTD.

Finally, there is an increased rate of behavioral and psychological disorders in children with LUTS including attention deficit disorder, bipolar disorder, learning disability, dyslexia, developmental delay, and Asperger’s syndrome. The population also may be enriched with psychological trauma. Logan et al. demonstrated increased rates of adverse childhood experiences (ACEs) in children with LUTS. These children tend to experience incontinence, enuresis, urgency, frequency, straining to urinate, and dysuria/UTI [34]. Children with neuropsychiatric disorders have lower rates of treatment progress and higher treatment drop-out rates as compared to those without. It has been proposed that the physiologic cascade that ensues is both precipitated and exacerbated by chronic stress that can result in pelvic floor dysfunction, urinary retention, and urine holding. However, further research needs to be conducted to better understand the physiologic impacts of ACEs and neuropsychiatric disorders on bladder function.

Despite the need for additional research evaluating NLUTD and emotional distress, there appears an increased likelihood of an anxiety or depressive symptomology both preceding and following NLUTD diagnosis in children and adolescents. Furthermore, there are initial indications from these investigations that emotional distress may influence symptom presentations. Across all age groups, the results of existing studies suggest a bidirectional relationship between the severity of urinary symptoms and emotional distress.

Impact of Psychological Factors on Coping

Psychological factors can also influence coping behaviors in NLUTD. Those who suffer from chronic urologic conditions often fear behaviors that could potentially intensify symptoms of urgency, frequency, and pain (e.g., movement or social interaction) and thus begin to decrease their social functioning in order to cope [35]. Over time, this can result in diminished participation in valued activities, increased depression, and negative appraisal of symptoms and self (“This is going to last forever”), which in turn may exacerbate pain and urologic symptoms. For example, in one study of 341 patients with IC/BPS, those with a greater tendency to catastrophize reported higher levels of affective pain and engaged in more illness-focused coping strategies such as avoiding daily activities [36]. As the literature on patients with NLUTD is quite limited, we can infer that a similar phenomenon may occur in such patients, who may have a similar clinical phenotype of their urologic condition despite different etiologies. This is demonstrated in a much smaller case study, where patients with MS (n = 18) reported utilizing a range of coping strategies to control urinary symptoms including reducing fluid intake, limiting movement, making trips to the toilet before the normal urge to void, avoiding leaving the house, straining while voiding, and using cranberry tablets or juice [17]. The authors hypothesize that as many of these strategies are considered “poor bladder habits,” they may increase the severity of urologic symptoms, thereby exacerbating the emotional burden of illness.

There is some data to suggest that anxiety and depression among patients with NLUTD may contribute to how the individuals experience urology symptoms and lead to treatment non-adherence. Accordingly, it is important to identify variables associated with both adaptive (e.g., exercise, relaxation) and maladaptive (e.g., avoidance, guarding) coping patterns. In a large study of SCI patients (n = 1479) [37•], positive affect and independence led to greater satisfaction with bladder function and fewer bladder symptoms, while higher pain interference was associated with increased symptom severity and worse functioning. These findings suggest that treatment efforts which support physical independence and positive affect have the potential to improve QOL in NLUTD patients.

Relationships and Quality of Life

Relationships: Personal, Social, Sexual, and Provider-Related (Adult and Pediatric Population)

With regards to urologic management in adults with NLUTD, one of the most important psychosocial domains is interpersonal relationships. In NLUTD, social relationships can be affected by patients’ perceived loss of control and the need for extensive planning around urologic symptoms prior to social engagements [4••]. Often, embarrassment due to visible catheters or incontinence episodes can lead to discomfort in public and social disengagement. Of note, less severe urologic dysfunction can be a significant predictor of social engagement [38]. In a qualitative study examining NLUTD and social behavior, participants acknowledged the constant need for symptom management affected their willingness to initiate and maintain social connections [39•]. Perceived lack of understanding from friends additionally results in decreased participation in social activities and relationships and increased disappointment from patients feeling they are missing out on social events. Additionally, this and other studies discuss the further negative impact that managing complications of NLUTD such as frequent urinary tract infections may have on social relationships [39•, 40]. Importantly, these studies also emphasize that social engagement can improve with treatment. Patients reported successful urologic intervention increasing autonomy, confidence, independence, and ability to re-engage in social activities and relationships.

In pediatric populations, socially, children with SB are at risk for impaired social participation secondary to the complex medical issues and NLUTD symptoms. Urinary incontinence may place restrictions on participation in social domains including independent living, education, employment, and relationships [41]. Furthermore, the stigma of incontinence can lead to significant social isolation as children become embarrassed by lack of control and fear of accidents.

Several studies have focused specifically on relationships with caregivers due to the need for assisted urologic care. One line of research focuses specifically on the “role changes” that ensue when NLUTD symptoms develop and the associated loss of independence [39•]. Family and friends that would not normally be involved in urologic care may suddenly assume certain caregiver roles after a patient develops NLUTD, and this results in strain on the relationship and stress to both patients and caregivers. Additionally, increased reliance on others can contribute to patients’ sense of burdening caregivers. Another quantitative study assessing barriers to performing CIC found that nearly a quarter of patients with SB surveyed felt that their caregivers had negative feelings about the need to assist with CIC, and therefore, this may hinder their performance [42]. These emotional difficulties were associated with feelings of fear or shame.

Sexual and intimate relationships are greatly affected in patients with NLUTD for multiple reasons. Patients with NLUTD often suffer from concomitant sexual dysfunction due to their underlying disease including erectile dysfunction, ejaculatory dysfunction, changes in genital sensation, orgasmic dysfunction, or loss of libido. However, urologic management in NLUTD may affect intimate relationships as well. A frequently cited source of anxiety with intimate relationships is the potential risk of incontinence during sexual activity, which results in embarrassment and feeling of isolation due to a perceived lack of understanding from sexual partners [39•]. Additionally, being unsure how to divulge their realities of urologic management to new intimate partners may be difficult and stressful to patients, leading to hesitancy entering new intimate relationships [39•]. While sexual relationships and intimacy are a huge source of stress to patients with NLUTD, healthcare providers frequently fail to discuss this aspect of urologic care with patients. Studies have indicated that patients desire information and assistance on how to maintain or start sexual relationships in the setting of their need for urologic management [43].

An important and understudied relationship in NLUTD is that of the patient and provider. One review sites multiple barriers to care in urologic office settings for SCI patients, including wheelchair-inaccessible waiting and examining rooms, lack of equipment or personnel to accommodate the need for assistance with transfers, increased time of appointments due to complex medical problems, transportation challenges, and a lack in overall sensitivity and awareness of office staff and health care professionals [44]. Additionally, an observational study of 100 patients with MS to examine common provider barriers to the evaluation of urinary symptoms found that many patients were never asked about urinary symptoms or never offered a referral to a specialist [45]. However, this study also found patient barriers to urologic care as well, including that patients themselves did not think their symptoms were severe enough to warrant the care of a urologist and that patients had significant concerns regarding the cost of visits. Additionally, 11% of patients in this study were not aware of therapies available to help their urinary symptoms at all.

Finally, in an interesting cross-sectional retrospective article examining insurance status in patients with NLUTD due to SCI, it was found that patients who were publicly insured were more likely to be treated with indwelling catheters or spontaneous voiding as opposed to CIC and less likely to take urologic medications as compared to the privately insured [46]. However, insurance type was not associated with differences in urologic symptoms or overall urology-specific QOL. These results are likely due to a complex combination of various social determinants of health, patient preferences, support networks, access to care, and urologic supplies or medications. As healthcare providers, increased awareness of such barriers to care may help strengthen the provider–patient relationship and therefore allow for optimization of urologic management in these patients. These studies highlight a broad range of psychosocial domains that may play a role in the relationships of patients with NLUTD with regards to their urologic management strategies and may help physicians empathize and therefore improve overall urologic care in an individualized manner.

Quality of Life

Urologic management of NLUTD can greatly affect QOL. The impact of NLUTD or incontinence on QOL was identified in fourteen studies from a systematic review assessing QOL in patients with neurologic conditions affected by urinary tract or bowel dysfunction [10]. When compared with controls, QOL was significantly worse for patients with urinary dysfunction and SCI, stroke, PD, or MS, mainly in areas of mental health, socialization, and physical functioning. One study included in this review assessed the impact of certain health-related QOL measures including pain, independence, and well-being on patient-reported urinary symptoms in patients with SCI and found a very strong association between the two, such that pain is associated with worse urinary symptoms, while increased independence and well-being is associated with improved symptoms [47]. This study highlights an important finding that objective symptoms may be differently perceived by different individuals depending on their overall mental state. Therefore, identifying and implementing rehabilitation that decreases pain and improves independence and well-being may help to optimize urinary-related QOL in patients with NLUTD. Finally, in the previously mentioned qualitative study regarding male veterans with PD, Moriariy et al. observed that NLUTD impacted QOL in these patients before motor symptoms [29].

These among other psychosocial domains greatly affect patients with NLUTD and are important to consider for healthcare providers offering urologic management strategies to such patients. Improving awareness and understanding may allow for improved overall care by addressing these domains when considering how best to manage patients with NLUTD.

Opportunity for Psychosocial Intervention for NLUTD

Psychosocial interventions for patients with NLUTD are not well documented in the literature, despite the growing body of evidence that these factors play an important role in the overall mental and physical health of the patient. While there is some evidence that cognitive behavioral approaches are beneficial in the treatment of coping mechanisms and mental health of patients with underlying conditions that may result in NLUTD, the possible effect on urologic management specifically has not been well documented.

Behavioral bladder training can play an important role in the management of NLUTD, including correcting voiding patterns of the frequency with timed voiding, controlling urgency, increasing voiding intervals, and decreasing incontinence episodes through habit retraining and prompted voiding [48]. Additionally, keeping a voiding diary can be beneficial, especially early in care to help patients and practitioners recognize voiding patterns and habits. While these strategies may be somewhat helpful in patients with NLUTD, they should also be used with caution. A goal in the urologic management of patients with NLUTD is the maintenance of adequate storage ability to protect upper urinary tracts from irreversible damage. While behavioral therapies can be a useful adjunct, they should always be considered only in the setting of safe urodynamic parameters; otherwise, more invasive urologic management with catheters, urologic procedures, or medications is required and cannot be replaced by behavioral therapies alone.

Cognitive behavioral therapy (CBT) is a psychotherapy technique that has been used in a multitude of chronic diseases including irritable bowel syndrome and chronic pain; however, the use in patients with NLUTD has not been documented in the literature. The use of CBT in patients with non-neurogenic overactive bladder (OAB) is of growing interest, which could be extrapolated to patients with NLUTD in the future. Recently published is a study protocol for a currently recruiting randomized, controlled trial of CBT in patients with non-neurogenic OAB looking at patient-reported outcomes and frequency-volume charts [49]. The same group previously published a feasibility study of 10 patients with non-neurogenic OAB who experienced an improvement in patient-reported outcomes assessed via questionnaires and mean urinary frequency after 12 weeks of CBT [50]. Further study of the possible use of CBT in OAB and other urologic conditions including NLUTD would be beneficial in the future.

Alternative therapies, including meditation and relaxation techniques, have also been implemented in chronic medical diseases with some varying success, although the data regarding such therapies in NLUTD again is lacking. There is one prospective observational case series on the use of integrated yoga in patients with NLUTD from MS [51]. In this study, after 21 days of integrated yoga intervention, 11 patients demonstrated improvements in post-void residual volumes and improved scores on both the Incontinence Impact Questionnaire-7 and Urogenital Distress Inventory-6. Although a small-case series, it demonstrates the feasibility of managing certain aspects of NLUTD with alternative methods.

While the data on psychosocial interventions for patients with NLUTD is scarce, with increasing interest in these domains of patient health, we are hopeful that more research will continue to accumulate. Such alternative interventions to medical and surgical therapy may serve as important adjuncts in patient care and help improve perception of urinary symptoms and possibly improve overall QOL. However, there interventions likely will complement and not replace the need for other forms of urologic management in these complex patients.

Discussion

Patients with NLUTD are complex and can be a challenging and unique population to treat. While the importance of urologic management in these patients for the maintenance of overall urinary tract and renal health is evident, the overlap with clinical urologic symptoms and psychological and social domains is a more recent area of interest. Studies have highlighted the high rates of overlap between NLUTD and psychological distress [13], anxiety [16,17,18],, and depression [6, 19, 20]. When left untreated, these patients may experience poorer outcomes in rehabilitation [13], decreased adherence to treatment [13], decreased sleep quality [17],poorer QOL [29], increased hospitalization rates [21], decreased functional gains [23], and increased all-cause mortality [25] and comorbid suicidality [26, 27]. Additionally, through some recent data on patients with PD and SB, there is some evidence that patients with depression and anxiety additionally experience worsened perception of their urinary symptoms [18, 28, 52]. Children and adolescents with NLUTD represent a distinct population of patients, and many of the studies focus on caregiver dynamics in this setting, with results suggesting that emotional distress is experienced by both patients and caregivers when managing NLUTD [31]. The increased incidence of anxiety and depression appears to be both preceding and following NLUTD diagnosis across all ages, which highlights the unique interplay between urologic symptoms and psychological distress in this population. Finally, relationships and QOL in patients with NLUTD are important psychosocial domains examined in recent literature. Relationships including personal, social, sexual, and provider have all been demonstrated to be affected by NLUTD, and our awareness of this as providers can help us to navigate care for these patients [4••, 39•, 42,43,44, 47, 53, 54]. While the literature regarding psychosocial intervention for these patients is limited, including recent evaluations of behavioral bladder training [48], CBT [49, 50], and yoga [51], it suggests an important opportunity for future study in order to offer more comprehensive and multidisciplinary care for this patient population.

Conclusions

Neurogenic lower urinary tract dysfunction can result in profound impacts on multiple psychological and psychosocial domains of patients’ lives, including the development of psychological distress, psychiatric disorders, impairment of relationships, social interactions, financial burdens, and other psychosocial factors. The data on psychological and psychosocial interventions for patients with NLUTD remains scarce; however, the goal remains improvement of patients' perception of urinary symptoms, improved function, and improvement of QOL.