INTRODUCTION AND OBJECTIVES There is a lack of good data in the literature evaluating the Health- Related Quality of Life (HR- QoL) in patients with urinary diversions because most of HR-QoL studies used inappropriate questionnaires. The aim of this study was to examine the changes in expectation and needs in terms of human adaptation and behavioural profiles in patients with ileal conduit (IC) after radical cystectomy (RC) for bladder cancer (BC) along the post-surgical illness course. METHODS A qualitative, multicenter cross-sectional study using a "narrative based" approach was planned. Patients treated with RC and IC for BC were recruited from three urological academic centre. For this qualitative research we proceed with a sampling reasoned choice (purposive), selecting groups of patients with follow-up from one up to more than 7 years after surgery. Data were collected through individual interviews. Qualitative analyses of the transcribed data were used to explore the adapting course of each patient along the post-surgical illness trajectory, obtaining a clear description of the evolution of the needs and expectations of the patients over the time. RESULTS We interviewed a total of 30 patients who underwent RC with IC at a mean follow-up of 7 years (± 63.07), with mean age of 76.43 years (± 7:41); 13 were females (mean age 77.15 ± 8:47) and 17 males (mean age 75.88 ± 6.71 ). The processing of the interviews allowed us to identify 2 major profiles: positive and negative. Patients with a positive profile resumed normal daily activities with no or limited restrictions both on the personal and the social level. This profile reflects a good HR-QoL. The negative profile reflects the patients for whom the ostomy has meant a worsening of HR-QoL. A positive profile was statistically more frequent in older patients (p = 0.023), with a longer follow-up (p = 0.042) and less complications rates (p=0.0002). According to the length of follow-up and the occurrence of complications, we identified further 5 intermediate profiles: 1-year intermediate profile, 3-year intermediate profile, 5-year intermediate profile, 7-year intermediate profile, >7- year intermediate profile. CONCLUSIONS 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. Patients’ satisfaction is related to the degree of adaptation to their new life with an urinary stoma and its correct management. Live "with urinary diversion" represents a new phase of life and not a deterioration.
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