QUALITY OF LIFE IN SURVIVORS FROM RADICAL CYSTECTOMY. THE USE OF QUALITATIVE ANALYSIS

INTRODUCTION AND OBJECTIVES Not so many studies have been dedicated to the trajectory of QoL along time in patients with ileal conduit urinary diversion after radical cystectomy. The present study aims at evaluating QoL of patients at 1, 3, 5, 7 years follow-up (FU) and its interaction with clinical variables. METHODS Two health sociologists administered 30 qualitative and narrative-based interviews to patients with radical cystectomy at 1, 3, 5, 7 years FU from three urology units. Patients were asked to compare the steps of their experience with stoma as far as QoL was concerned. 17 male and 13 female patients were interviewed, minimum age being 65 and maximum age 94. The interview guide was constructed evoking the illness and disease trajectory as follows: diagnosis, treatment, surgery; rehabilitation (physical, mental, social); changes of major impact; feelings of shame, embarrassment and rejection; organization of daily routines and time, self-image and self-esteem; family relationships, emotional and sexual relationship, work, friendship relationship and behaviour in public. Interviews were analysed with Atlas.ti software. RESULTS Participants underlined 4 factors as crucial for QoL increase/decrease: 1. concern about urinary leakage and detachment of the bag; 2. (frequent) episodes of detachment of the bag resulting in reluctance to go outside; 3. fear of losing partner (wife or husband) who usually provide assistance in everyday dealing with stoma; 4. QoL complications worsening with age related to stoma management: hernias, infections, gaining weight, etc.. Additional concerns for a bad QoL were: reliance on partner for stoma management, fear of emanating odour of urine, giving-up with friendship and social relations. Surprisingly enough no patients referred to body image problems related to the bag. Because of such crucial factors scholars designed 5 profiles of illness following patients illness narrative: respondents at 1-3 years FU said their previous life times were completely lost, instead QoL was much better in patients at 5 years FU (than in the post-surgery period); Qol as to stoma is still good at 7 years FU though other problems took-over in patients concerns (hernias, kidney infections, obstructions to the stoma); same was for patients beyond 7 years FU where awareness of general deterioration due to age increases. CONCLUSIONS Qol improves along with the timeline of the disease trajectory. After 5 years Qol stabilizes at acceptable levels as far as bearing a stoma tends to become a real routine.