Urinary diversion is associated with a multifaceted and distinct set of metabolic consequences, symptoms, and functional outcomes that interact and converge to form a spectrum of health-related quality-of-life experiences after diversion surgery. Concern and problem areas – or domains – that are specific to urinary diversion include changes in physical function, such as bowel, sexual and urinary function, altered physical appearance (i.e., body image) related to the presence of a stoma or urostomy and the change in how urine is eliminated, as well as resultant social concerns related to real or perceived strains in intimate relationships and casual social interactions. In high burden cases, these functional and social concerns can mount and spill into emotional and psychological domains, resulting in anxiety and depressive symptoms. In this section, we will consider each of these dominant domains in more detail.

General physical and psychological concerns may affect a large proportion of patients who undergo major extirpative or reconstructive surgery. Patients undergoing urinary diversion may suffer from several physical issues including pain, fatigue, and sleep disturbances. Additionally, they may experience distress related to disruption and limitations in physical function [33]. While a study by Henningsohn et al. suggests similar distress levels between orthotopic neobladder patients and matched control populations 1 year following surgery [34], Palapattu et al. showed that nearly half of cystectomy patients report general distress [35]. Benner et al. highlighted persistently elevated pain and fatigue scores up to 6 months after urinary diversion in their study of 33 patients treated with radical cystectomy and urinary diversion [36]. Another study suggested that patients’ distress improves to baseline approximately 12 months after surgery [37]. The complex interplay between psychological distress and sleep disturbances may profoundly contribute to health-related quality-of-life deficits. Thulin et al. studied patterns of sleep disturbance following urinary diversion, reporting that negative sleep changes attributable among orthotopic neobladder, continent reservoir, and urostomy occurred in 37%, 14%, and 22% of patients, respectively [38]. The authors concluded that neobladder-specific urinary issues such as the need to set a voiding alarm may preclude adequate sleep.

Changes across several functional domains are also significant concerns after urinary diversion. For example, changes in urinary function are a predominant concern for patients before and after diversion surgery. Maintaining urinary continence after urinary diversion may have a tremendous impact on socialization and subsequently quality of life. Loss of volitional control over urinary continence may also impact body image which can lead to isolation and depression for patients who receive an ileal conduit [39]. Anxiety associated with fear of urinary leakage and odor impacts patient quality of life significantly after both conduit and continent urinary diversion. Not surprisingly, urinary incontinence and leakage are the most commonly investigated domain among HRQOL in bladder cancer patients [40]. Leakage with conduit diversions is most commonly due to poor external appliance adherence or suboptimal stoma placement. Among ileal conduit patients, urinary leakage rates during daytime and nighttime have been reported as high as 40%, and patient anxiety related to leakage appears even higher [41, 42]. Improvements in surgical techniques as well as enterostomal nurse education have decreased some of these issues [43]. Although continent urinary diversions are most often used to preserve normal urinary function, incontinence rates and urine leakage are still relatively high, particularly at night, and may be related to infrequent catheterization or uninhibited contractions [44].

Changes in sexuality and sexual health may be underestimated among men and women after urinary diversion, particularly in cases of concurrent cystectomy. In men, erectile dysfunction has been reported in up to 80% of patients after cystectomy and ileal conduit [45]. Many factors contribute substantively to sexual dysfunction after urinary diversion, including physical and functional changes that result from collateral tissue injury or loss in the case of cystectomy (e.g., erectile dysfunction, altered vaginal anatomy), changes in body image related to the urinary diversion itself, and attendant emotional and psychological concerns that follow physical and functional insult. As discussed later in the chapter, some of the currently available bladder cancer-specific questionnaires integrate both physical and psychosocial aspects of sexual dysfunction. However, many factors such as quality of erections, decrease in penile length, impaired sexual function even before surgery, partner response to changes in function and appearance, and overall psychological issues are often overlooked [46]. As with other types of pelvic surgery, post-diversion sexual function depends on a number of factors, including age, initial sexual function before surgery, and surgery-specific factors such as nerve and vaginal sparing. Hekal and colleagues reported that a majority of men achieved adequate erections after nerve-sparing cystectomy and urinary diversion without needing other sexual dysfunction treatments [47]. Other studies suggest that prostate-sparing cystectomy and urinary diversion may preserve sexual function postoperatively [48–50].

The role of urinary diversion type on post-diversion sexual and erectile dysfunction has not been fully elucidated. While Hedgepeth and colleagues identified a potential benefit in men who received neobladder diversion, others have not shown a difference in recovery of sexual function between continent and conduit diversions [10, 51–53]. In females, sexual dysfunction after urinary diversion is primarily related to either nerve damage affecting sensation, changes to vaginal anatomy that effect compliance and/or capacity, and decreased lubrication [54]. Among women treated with vaginal-sparing cystectomy and urinary diversion, 80% remained sexually active in one study [55]. In contrast, others have reported more disappointing results. Zippe and colleagues found that less than half of patients were sexually active with the most commonly reported complaints consisting of inability to achieve orgasm (45%), decreased lubrication (41%), decreased sexual desire (37%), and dyspareunia (22%) [56]. Another recent study reported that in vaginal-sparing cystectomy patients more than 65% were sexually active [57].

Recognizing the relationship between psychological stresses related to urinary diversion and sexual dysfunction is critical. Altered body image after undergoing either a conduit or continent urinary diversion and the anxiety associated with potential urinary incontinence can further negatively impact sexual function. In addition to patients’ perceived psychological distress, partners experience stress related to urinary diversion. The presence of a stoma, external urostomy appliance, or catheterizable channel may contribute to sexual dysfunction or a lack of sexual interest among couples. While repulsion and lack of interest in sexual intimacy among urinary diversion patients has not been well studied, it has been demonstrated among colorectal cancer patients living with ostomies [58].

Bowel function and dysfunction represent another area of concern among urinary diversion patients. Diversion can impact both short-term and long-term gastrointestinal function. While several studies have examined short-term changes in and recovery of bowel function after urinary diversion, relatively few have investigated long-term bowel changes to bowel or their impact on quality of life among urinary diversion patients. Several prior studies have reported normal bowel function after urinary diversion [59, 60]. Although a recent study investigating bowel changes 1 year after cystectomy found that more than 70% of patients were satisfied with bowel function at 1 year, a relatively large group of patients experienced more frequent diarrhea, defecation frequency, fecal incontinence, and life restriction from bowel disease [61]. Further research is needed to identify and prevent morbidity associated with bowel issues and improve the urinary diversion patient’s quality of life.

Body image has been defined as the way patients perceive themselves [62]. Regardless of type of urinary diversion received, long-lasting or permanent changes in the body and body image are common for many patients. However, some studies suggest that despite dramatic differences in external body changes between diversion types, body image is important in all diversion patients [51, 63]. Nevertheless, patients with conduits and stomas clearly experience a more dramatic alteration in their body’s appearance. A recent Korean study suggests that neobladder patients report relatively better body image compared to patients managed with ileal conduits, which may reflect not only differences in individuals’ perceptions of their body but also cultural values and norms [64].

A number of instruments are available to evaluate health-related quality of life among patients treated with urinary diversion. These include general – or generic – instruments, such as the Medical Outcomes Study Short Forms (SF-36 and SF-12) and EuroQol five dimensions questionnaire (EQ-5D), as well as more specific condition-oriented measures that target symptoms, functional complications, and health problems that are particularly germane to urinary diversion [65–67]. Of note, most condition-specific instruments that assess issues associated with urinary diversion have been developed in the context of bladder cancer. Examples of these include the Functional Assessment of Cancer Therapy-Bladder (FACT-BL) cancer subscale, the Vanderbilt Cystectomy Index (VCI), the Bladder Cancer Index (BCI), and the European Organization for Research and Treatment of Cancer Quality-of-Life Bladder Module (EORTC QLQ-BLM30) [68–71]. The use of general health surveys to assess health-related quality of life and well-being after urinary diversion has several limitations. Early studies on health-related quality of life after cystectomy and urinary diversion typically used generic QOL questionnaires supplemented with add-on questions in an attempt to improve the sensitivity to diversion-related health outcomes. Because these makeshift questionnaires did not undergo full psychometric evaluation, their reliability and validity are uncertain. (Table 11.1)

The condition-specific instruments that have been developed thus far contain items (questions) that focus on symptoms, complications, and health impairments that can occur after cystectomy and urinary diversion and therefore cover many of the health domains that were reviewed earlier in the chapter. The Vanderbilt Cystectomy Index (VCI) utilizes the general FACT as its core questionnaire with the addition of supplemental bladder cancer-specific questions derived from FACT-BL, FACT-colorectal, and Functional Assessment of Incontinence Therapy-Urinary. It contains urinary, bowel, and sexual function components. The FACT-BL consists of 39 questions inclusive of the general FACT core. Twelve diversion-specific questions have been added to the general questions that cover body image, stoma care, and sexual function. The Bladder Cancer Index (BCI) is a validated and reliable questionnaire developed with patient and physician feedback that includes urinary, bowel, and sexual function components. It consists of 36 questions and contains function and bother subdomain scores. The BCI has been validated across stages of bladder cancer and for different urinary diversion modalities. The EORTC-QLQ-BM30 is modified from the EORTC-QLQ-C30 and includes 30 additional items specific to bladder cancer. This instrument has not been fully validated yet but is in the late phases of validation. A 23-item neobladder HRQOL instrument called the IONB-PRO was recently developed to provide more discrete information gathering for issues and concerns that are specific to neobladder patients [77]. Although tailored to neobladder diversion, it may not provide reliable or responsive information for other diversion types, likely limiting its use in comparative studies.

In addition to the condition-specific instruments that are currently available to assess health-related quality of life after cystectomy and urinary diversion (FACT-Bl, VCI, BCI, EORTC QLQ-BLM30), several new measures are in development, such as the Bladder Utility Symptom Scale (BUSS) and the Memorial Sloan Kettering Idiographic Model [75, 76]. The BUSS is a ten-question survey designed to measure quality of life in all stages of bladder cancer patients. The questionnaire has undergone validity and reliability testing and consists of both generic and bladder cancer-specific questions [75]. A limitation with this instrument is that it does not contain any diversion-specific components, in part because it was designed to apply to all stages of bladder cancer. More recently, researchers at Memorial Sloan Kettering Cancer Center outlined the limitations of the aforementioned standard HRQOL instruments, noting that while they can be implemented and used fairly easily, they fail to capture individual patient concerns and also fail to account for the impact of response shift [76, 78]. The authors proposed adding idiographic measures of progress toward goal achievement and difficulty with activities among patients prior to cystectomy and urinary diversion and found that these additional metrics improved estimation of health-related quality of life. Further validation of this approach is necessary in the postoperative setting. A summary of available condition-specific HRQOL measures is shown in Table 11.2.

As noted earlier, most early studies that explored health-related quality of life in cystectomy and urinary diversion patients used either general quality-of-life instruments or informal, un-validated questionnaires. Porter and Penson noted that of 15 quality-of-life studies identified in a systematic review of studies published between 1966 and 2004, few consisted of HRQOL assessment with either a condition-specific or validated instrument, and most omitted baseline or serial longitudinal data, making results difficult to interpret [79]. General assessment tools such as EQ-5, Sickness Impact Profile, SF-12 and SF-36, and FACT have been used to measure quality of life in urinary diversion patients with similar scores noted on average between neobladder and ileal conduit patients [80]. More recently, a greater number of studies have compared health-related quality of life among diversion patients using condition-specific validated assessment tools such as VCI, BCI, FACT-BL, QLQ-BLM30, and IONB-PRO. The vast majority of more recent studies, although methodologically improved, have been retrospective and cross-sectional, suggesting continued room for improvement in the area of research and clinical assessment [81].

From a clinical and research perspective, the most interesting and relevant HRQOL comparisons are between different types of urinary diversion (e.g., ileal conduit vs. neobladder vs. catherizable colon pouch), and while many prior studies have compared HRQOL across urinary diversion types, almost none have demonstrated a significant difference in health-related quality-of-life outcomes between continent and incontinent diversions [51–53, 63, 82–87]. Notably, Anderson and colleagues reported higher quality of life at 1 year postoperatively in ileal conduit urinary diversion patients compared to neobladder patients [69]. Conversely, Singh et al. reported better physical and social function among neobladder patients compared to patients who received an ileal conduit in a prospective study, with scores diverging between 6 and 18 months after surgery, despite similar baseline assessment [87]. A recent multicenter Italian study investigating quality of life in neobladder patients using the IONB-PRO and EORTC QLQ-BLM30 reported that longer follow-up and lack of urinary incontinence were predictors of better emotional/relational health [88]. This study, however, lacked baseline data and did not consist of a comparison group. A more recent study reported higher quality-of-life scores among ileal conduit patients compared to neobladder patients more than 10 years after urinary diversion [89]. In contrast, a recent systematic review suggested that improved reconstructive techniques representative in modern comparison studies favor ileal neobladder in terms of higher quality-of-life scores after urinary diversion surgery [90]. In contrast, a relatively large meta-analysis of observational HRQOL studies that used validated questionnaires reported by Cerruto et al. identified modest but insignificantly higher health-related quality-of-life scores after neobladder diversion compared to ileal conduit. Quality-of-life outcomes were significantly better among patients treated with orthotopic neobladder in a sub-analysis of studies based on the EORTC QLQ-C30 [91].

Confounding, biases, and patients’ preferences are a major if not fatal limitation in past and likely future efforts comparing health-related quality-of-life outcomes between continent diversions and conduits, principally because randomization is not feasible to address the question of which is “better” and because patients who select neobladder reconstruction tend to be younger, healthier, and more engaged and motivated regarding their diversion selection [16]. All of the comparative studies presented and discussed thus far must be viewed and interpreted through a cautionary lens for this reason. Table 11.3 summarizes an update of the most currently available HRQOL studies comparing outcomes between different urinary diversion groups.