In the last two decades, there has been a growing recognition of the importance of HRQOL among patients undergoing invasive surgical procedures. Therefore, some patients achieve durable cancer-free outcomes. It becomes necessary to safeguard the patients’ HRQOL related to their bladder cancer and its treatment .
In our trial we investigated with validated instruments the overall quality of life of a very selected population of patients. In particular, we demonstrated that women undergoing CUS experience a loss of appetite and a worsening of fatigue in daily activities, inducing a worsening of both the physical and emotional well being.
In our paper some aspects are interesting: the study was conducted on long term disease free survivors after RC for clinically localized bladder cancer. This specific population allows us to avoid biases related to the initial postoperative worse HRQOL and/or the fear for tumor recurrence after RC . Moreover, we excluded from our study both adjuvant-related bother and social/emotional implication of disease progression and obtain health-related HRQOL results with minimal biases.
A further strength of this paper is the use of more than one specific validated questionnaire. In the majority of scales and items no differences were found between treatment groups in several clinical trials, such as in our study: therefore, the use of several questionnaires allow us to define the minimal variances across different treatment groups.
The quality of life in patients undergoing cystectomy should take into account many aspects that must be evaluated in order to have data that comes as close as possible to the real situation of the patients themselves. No questionnaire, even if validated, disease specific and well-built, will take into account all the aspects necessary to have a complete evaluation. For this reason we decided to use different and validated questionnaires to evaluate more aspects as possible like: functional, symptoms, global health aspects (EORTC QLQ-C30), the effects of the urostomy (EORTC QLQ -BLM30) and patients well-being (FACT-BL).
Several Authors, by using a single HRQOL questionnaire, did not find any significant correlation between HRQOL and the urinary diversion type. Using several questionnaires it is possible to evaluate different aspects regarding patients HRQOL. Consequently more differences, if exist, can be measured. Furthermore the differences obtained can be evaluated by analyzing several aspect of patients life that only with multiple items, provided by multiple questionnaires, would be possible. Saika et al., by using the EORTC C-30 questionnaire only, concluded that the type of urinary diversion does not appear to be associated with a different HRQOL . In our study, beyond the differences we obtained in EORTC C-30 regarding “appetite loss” and “fatigue” in favor of BK-IC/ONB-VIP, the FACT-BL questionnaire showed a significantly worse HRQOL for CUS compared with BK-IC/VIP-ONB regarding “physical well being” and “emotional well being”. This data can be explained by the fact that patients with CUS showed worse HRQOL outcomes when compared with BK-IC/VIP-ONB merely for “appetite loss” and “fatigue” (EORTC QLQ -C30).
The suggested link between the worsening of “appetite loss” and “fatigue” (EORTC QLQ -C30) and the decline of “physical well being” and “emotional well being” (FACT-BL) could be investigated only by using different questionnaires.
Moreover, the multiplicity of aspects investigated allows us to evaluate possible differences between what is expected based on surgical and anatomical data in literature and the real quality of life of the patient. For example during cystectomy the neurovascular bundle could be damaged  causing the worsening of the sexual female quality of life and sexual desire. This aspect should be affect emotional wellbeing inducing a decline of the last one. Under these conditions by analyzing both the sexual aspect (BLM-30) and emotional wellbeing (FACT-BL) we found that there is no relation between them, in fact we observed a decline physical and emotional wellbeing and no differences in sexual function.
The present study has several limitations that should be considered when interpreting our results: in particular, this is a retrospective, cross-sectional, non randomized study in a limited number of patients. It caused a lack of information about baseline pre-treatment HRQOL evaluation, even if all data have been collected and assumed by the case history. However, the possibility of baseline differences in terms of HRQOL among the groups cannot be ignored. Some items, not specific for urological patients, such as mood disturbance or cognitive status were not included in our evaluation. Because this was not a randomized clinical trial, certain biases may have been introduced into analysis that were not properly controlled for and may have impacted the outcome, including the policies regarding urological operations in two different urologic centers involved in this study. In particular, as reported in the “2nd International Consultation on Bladder Cancer recommendations on the reconstructive options after radical cystectomy”, there are no evidences to recommend one form of diversion over another one, in females . Consequently, the two referral centers that performed RC did not base the choice for urinary diversion on standard criteria, but have tailored the UD case-by-case. Therefore, we can suppose that the loss of appetite and the fatigue as well as the physical and emotional well-being scores in the CUS group may depend not only on urinary diversion but also on patients’ characteristics.
Finally, as suggested by Studer, there is a lack of specific items regarding the management of the stoma . We need further larger, prospective longitudinal and randomized studies, in order to confirm these findings among the urinary diversion groups.