Quality-of-life outcomes and unmet needs between ileal conduit and orthotopic ileal neobladder after radical cystectomy in a Chinese population: a 2-to-1 matched-pair analysis

There are still some controversies over whether OIN is the most optimal form of UD after RC in terms of HRQoL. Although some studies [11‐13] reported that OIN could provide marginally better HRQoL scores than IC, other studies [14‐16] argued that there was no significant difference between them. However, there is significant selection bias in these studies in comparing HRQoL between OIN and IC patients, which may cause differences in the preoperative status between these studies. In addition, most of these studies neglected the disease-specific QoL in comparing HRQoL outcomes between the two UDs. For these reasons, we performed a match pair analysis in the present study. Based on the similar baseline characteristics, we evaluated the HRQoL from two aspects at regular intervals postoperatively: one is the change of body image change by using the BIS questionnaire [8], and the other is the disease-specific QoL by using BCI questionnaire [9]. To further understand the details of cancer trajectory, we also presented intermediate profiles by Interview Guide (IG) [10] about the unmet need information. It was found that OIN patients were better in body image, and IC patients were better in UF and UB at the one-year follow-up level. Surprisingly, there was no significant difference in BIS and UB between the two groups at the long-term follow-up level, although UF remained a problem in OIN patients. We also found some differences in unmet need at each time point of the illness trajectory.

It was found in our study that BIS in OIN patients was superior to that in IC patients within the one-year follow-up period. However, a previous study [17] showed no significant difference in BIS, and in their longitudinal model they found that age was correlated with the BIS, suggesting that older patients had slightly better scores. To overcome this shortage, we also performed an MPA in our study in term of age, gender and ASA, score so that the baseline characteristics of these two groups were more comparable. It is worth to mention that there was no significant difference in BIS between the two groups at the long-term follow-up level (P = 0.1136), which may be directly related to the positive effect of time, as was the case with that reported in previous studies [17‐19], although it needs a relatively long time.

In addition, OIN patients had poorer UF than IC patients, which is consistent with the conclusion of Gilbert et al. [9] who originally designed the BCI questionnaire related to UF, saying that OIN patients had more voiding problems as compared with IC patients. The long-term follow-up results obtained at 12, 24 and 36 months showed that urination always remained a problem in OIN patients, but it tended to be stable after 12 months, which is similar to the conclusion of Hedgepeth et al. [17]. It is generally considered that urinary leakage in OIN patients may result from the loss of reflex micturition and injury to the urethral sphincter. In order to reduce the adverse effects due to urinary dysfunction, patients need to form a new habit of urination and on the other hand the doctor’s instructions about functional training such as Kegel Exercise may help to reinforce the function of the urethral sphincter of patients. As shown in Fig. 2a, the UF was improved markedly at 12 months. However, IC patients had to face the problem of peristomal urinary leak from the pouch, which can only be overcome by good self-care or with the assistance of care providers. We also found that this problem was improved satisfactorily after 12 months. Figure 2b shows that OIN patients had more UB than did IC patients within a year, while there was no significant difference between the two groups in a longer follow-up duration. However, Hedgepeth et al. [17] reported no significant difference in UB between OIN and IC groups, probably because of the difference in baseline UB between the two groups. We consider that poorer UB within a year in OIN group may be due to the UF, because our long-term follow-up observation showed that UB was improved with the improved UF (Fig. 2b). Moreover, UB did not deteriorate significantly compared with that before surgery in IC patients. To some extent, it may be due to the fact that patients always had the UB at the diagnostic phase with the anxiety of caring about malignant tumor for the occurrence of hematuria and urine frequency. Most postoperative patients were bothered by problems of peristomal urinary leakage, foul urine odor and wearing of urine ostomy pouches, which can be improved or adapt. Based on previous studies and our present study, neither of the two UDs shows absolute advantage. Therefore, in the clinical practice, we not only need to make an optimal decision upon surgical options, but also make every endeavor to improve the postoperative HRQoL of special patients.

The measures that we used to assess HRQoL in patients with muscle invasive bladder cancer (MIBC) were unable to distinguish between health related problems and the patient desire or need to receive professional attention or care for these problems. it was imperative to identify and address the unmet needs of patients with MIBC at each time point of the illness trajectory. To optimize the quality of provided health care and gain more comprehensive understanding about potential changes in patient needs and challenges, the responsible physician may be more helpful to the patients to achieve better quality of life. Firstly, more IC patients were concerned about their postoperative self-care problems during the diagnostic phase, presumably because of the apprehension about the postoperative use of urine ostomy pouches. OIN patients without the above worries can make an autonomous choice to live a normal life as ordinary people. Secondly, at the time of following after surgery, OIN patients met with more problems with urine leakage during the short-term postoperative phase, which is consistent with the conclusion of previous studies [17]. However, most of these patients did not seek help from their family members or other care providers, suggesting that urine leakage did not bring them intolerable inconvenience. Thirdly, we found that IC patients had mild physical and social relationship problems during the long-term follow-up phase, which is consistent with a previous perspective study [11]. These problems may be related to the use or leakage of urinary ostomy pouches.

The present study has some limitations. Firstly, the information about the unmet needs in each patient was collected retrospectively, which may run potential risk of recall bias. Secondly, the number of female patients with bladder cancer is relatively small, accounting for about 10 % of all bladder cancer cases in the Chinese population [20, 21]. Thirdly, as nerve-sparing RC was not performed in our included patients, sexual life was lost completely in part of these patients. But as most of our patients were too shy to talk about their sexual life to doctors and other unfamiliar relations, it was difficult for us to make an evaluation on this problem. Fourthly, the number of OIN patients is relatively small. One reason is due to the preference of surgery on the part of the doctor, and the other is due to the consideration on the part of the patient. Fifthly, there is a deviation in our groups’ complication rates according to previous studies, two reasons may affect the complication rate in our study: (1) some patients who had high-grade complications were unwilling to participate in our follow-up questionnaire; (2) some high-grade complications related to radical cystectomy were avoided successfully due to the skilled surgical technique and rich experience of our department.