Behavioural profile and human adaptation of survivors after radical cystectomy and ileal conduit

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RESEARCH

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Behavioural profile and human adaptation of survivors after radical cystectomy and ileal conduit Maria Angela Cerruto1, Carolina D’Elia1*, Giovanni Cacciamani1, Davide De Marchi1, Salvatore Siracusano2, Massimo Iafrate3, Mauro Niero4, Cristina Lonardi4, Pierfrancesco Bassi5, Emanuele Belgrano2, Ciro Imbimbo6, Marco Racioppi5, Renato Talamini7, Stefano Ciciliato2, Laura Toffoli2, Michele Rizzo2, Francesco Visalli2, Paolo Verze6 and Walter Artibani1

Abstract Background: There is a lack of good data in the literature evaluating the Health-Related Quality of Life (HR- QoL) in patients with urinary diversions. 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). Materials and methods: A qualitative, multicenter cross-sectional study using a “narrative based” approach was planned. 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. Results: Thirty patients participated in the study. 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 complitations, we identified further 5 intermediate profiles. Conclusions: 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. Keywords: Radical cystectomy, Ileal conduit, Health related quality of life

Introduction Bladder Cancer (BC) is the most common malignancy of the urinary tract and the seventh most common cancer in men and the 17th in women [1]. In the literature, several surgical options of urinary diversion after RC have been described, from simply diverting the urine through a conduit to orthotopic reconstruction. The ideal urinary diversion after RC should be easy to prepare and easy to handle, presenting few complications, low mortality and morbidity; moreover it should protect the * Correspondence: [email protected] 1 Urology Clinic, University of Verona, P.zza L.A. Scuro 10, Verona 37134, Italy Full list of author information is available at the end of the article

upper urinary tract function and should be well accepted by the patient, thereby ensuring the best Health-Related Quality of Life (HR-QoL) as possible. From the study of the literature on t