This is the first qualitative study evaluating a cohort of patients at progressive and different follow- up, making it possible to highlight the changes in patients’ expectation and needs as they learn to manage the urinary stoma and to live with it. The main aim of this qualitative study was to select the most appropriate tools to get “specific” rather than “generic” answers in the assessment of QoL in patients who underwent radical cystectomy and IC. The processing of the interviews allowed us to identify 2 major profiles (“positive” and “negative”) and 5 intermediate profiles. The 1st year after surgery is characterised by the cohesistence of the two opposite and homogeneous situations described as positive and negative. However, during the 1st year after surgery, the experience perceived by the patients is better in terms of QoL compared to that perceived in the 3rd year after surgery. This finding is due to the fact that within the 1st year after cystectomy patients are optimistic about their treatment made and recovery. After 3 years of follow-up, patients begin to take stock of their situation and the comparison between their current situation and the life before cancer is inevitable. This greatly affects patients’ experience, who feel trapped in a new situation strongly dependent on urinary diversion. Patients’ life completely changes, and the feeling of not to being the same as before takes precedence over all aspects of QoL: Since the 5th years after surgery the positive profile becomes more and more frequent. This change in perspective is due to the phenomenon of adaptation. Actually according to Canguilhem’s definition, health is not something defined statistically or mechanistically, but rather as the ability to adapt to one’s environment . Health is not a fixed entity. It varies for every individual, depending on their circumstances. Health is defined not by the physician, but by the person, according to his or her functional needs. The role of the physician is to help the individual adapt to their unique prevailing conditions. Which comes fairly close to defining “personalised medicine” . Canguilhem’s definition of health, or rather of normality, includes the animate and inanimate environment, as well as the physical, mental, and social dimensions of human life. Therefore it puts the individual patient in a position of self-determining authority to define his or her health needs. Through this definition, healthcare gets a place in the equation as the doctor (or other healthcare worker) becomes a partner in delivering care according to the needs of the patient. Thus making healthcare a service delivered to the individual in need of care. It ‘obvious that the adaptation to the new condition after cystectomy has a significant role in the evaluation of patients’ QoL.
Recently Mohamed et al.  highlighted the importance to know all patients’ needs in order to ensure patients’adequate involvement in their healthcare, and to enhance post-surgery QoL. Using our narrative approach we might observe that initially the urinary diversion is not accepted or it perceived as a limiting factor, over time it becomes an aspect of patient’s life. The daily activities are no longer influenced by the presence of the urinary stoma. The ostomy management becomes more and more familiar and the patients, although they always need the support of their partners, are no longer completely dependent. The recovery of relational activities plays a very important role in QoL, significantly improving the patient’s experience. Although since the third year of follow-up QoL improves significantly in most cases, some aspects still remain critical. The continuous worrying about the unintentional detachment of the urinary stoma plate or bag leads patients to live in a constant state of alert in order to cover such eventuality. In some cases, this fear restricts patients conditioning their social relations. Although episodes of detachment are drastically reduced over time because of a better and consolidated management of the external urine collection device, the fear of a possible unintentional detachment still remains. Another aspect that may affect patients’ QoL in the long term is the concern about losing their partners, who not only help them in the management of the stoma, but they represent a moral support of paramount importance.
Another aspect reported by the patients even after many years after surgery is the renunciation of even short trips because of the fear of losing urine. Many patients must be sure to always have everything they need for a proper management of the ostomy in any situation.
A further aspect that may negatively affect patients’ QoL, mainly in the long term, is the presence of late postoperative complications such as hernias, urinary tract infections, stenosis of the urinary stoma, peristomal skin lesions, prolapse of the stoma and the weight gain, able to worsen the ostomy management.
In 2010 Gemmill et al. evaluated the health-related quality of life among cancer patients with continent and incontinent urinary diversion, mailing to 2890 individuals the City of Hope HRQOL-Ostomy Questionnaire. Of the 1,600 returns, there were 307 responses from patients with urinary diversion. Less than 27% of prior sexually active patients resumed sexual activity after surgery, while more than 40% of patients reported feeling depressed, and most patients also reported difficulty in adjusting to their diversion, difficulty with urine leakage, skin problems, difficulties in managing care, fear of recurrence, financial worries, family distress, and uncertainty about the future .
Also Richbourg et al. evaluated the difficulties related to the presence of a ostomy. The colleagues mailed 140 surveys to ostomates who are 18 years older and who have undergone a urinary or fecal diversion. The surveys demonstrated a return rate of 31%; the more frequent difficulties referred by the patients were, as in the forementioned study: peristomal skin irritation (76%), pouch leakage (62%), odor (59%), reduction in previously enjoyed activities (54%), and depression/anxiety (53%).
It’s important to observe, moreover, that about 20% of the patients did not seek help. However, even if the concerns referred by the patients are overlapping, our study if the first qualitative study evaluating a cohort of patients at progressive and different follow-up, highlighting the changes in patients’ expectation, needs and apprehensions during the time .
With regard to rectal cancer patients, in 2013 Recalla et al. published a sistematic review, evaluating the ostomy care management for colostomy, ileostomy and urostomy, as a part of a best practice guideline document generated by a task force appointed by the Registered Nurses’ Association of Ontario. All the 32 evaluated studies was quantitative studies. Generally, the studies reported that patients with stoma experienced poorer results in emotional, social, cognitive functioning, low self esteem and depression, but long term qualilty of life, when compared to the general population, mirrors that of the normal population .
Recently, Beaver et colleagues evaluated patient perceptions of follow-up care in patients after treatment for colorectal cancer. The dominant theme was ‘knowing what to expect’ after bowel surgery, and the authors concluded that nurse-led clinics and/or telephone follow-up by specialist nurses may be effective models of care for this particular patient group, providing appropriate access for meeting clinical, psycho-social and information needs. Although this study focused the attention on patients with ostomy after colorectal cancer treatment, the patients’ worries are oriented on the future life’s expectations, as in our case. The authors concluded that traditional follow up methods of routine hospital follow-up may be effective on disease recurrence, but does not always address patients’ psycho-social and information needs .
Moreover, innovative strategies of follow up are needed, introducing qualitative approaches such, for instance, our interviews.