Table 1 Data collection

Epidemiology

(1) Sociodemographic characteristics: age, sex, place of birth, educational level, marital status, household income, working situation, history of residences and of occupations.

(2) Lifestyle: history of tobacco consumption, dietary habits and physical activity.

(3) Medical history and medication use: weight, height, urinary tract infection, hematuria, kidney stones, skin or respiratory allergies, anti-hypercholesteremic and anti-inflammatory drugs, hormonal treatment, personal and family history of cancer

Face to face interview

Disease management

(1) Disease presentation: presence of symptoms (hematuria, pollakuria, dysuria, urgency, hydronephrosis), alteration of health status

(2) Procedures before diagnostic resection: urinary cytology, urine culture, abdominal ultrasound, urinary tract fibroscopies, imaging (scanner, MRI)

(3) Diagnosis through transurethral resection of the bladder: Hervix or Narrow-Band-Imaging (NBI) fluorescence, number and location of resected tumors, size and aspect of the largest tumor

(4) Treatment: for NMIBC intravesical instillations and cystectomy; for MIBC: chemotherapy, radiotherapy, for both NMIBC and MIBC: lymphadenectomy, urethrectomy, nephro-urethrectomy, urinary diversion, blood transfusion, any hospitalization and complications.

(5) Outcomes: locoregional and distant recurrences (dates, sites, pathology, treatments, etc.) and death (date and place)

Patient medical records

Pathology

(1) Histological type and subtype

(2) Prognosis factors : for NMIBC tumor stage, grade, CIS associated, lymphovascular invasion; for MIBC, TNM stage, surgical margins, lymphovascular invasion, lymph node density

(3) Pathological review for all cases at initial diagnosis and recurrence

Patient medical records

Resource use

(1) All hospitalizations: dates, type of facility, service, type of care and diagnosis-related group.

(2) Outpatient and community care : Cystoscopies, Imaging (CT, MRI, ultrasound, etc.), urine cytology, urine culture and tumor biomarkers

(3) Sick leaves

Patient medical records

Self-administered questionnaire

Quality of life

(1) Generic measure: EuroQol EQ-5D-3 L questionnaire

(2) Generic measure: EORTC QLQ-C30 questionnaire

(3) Specific measures: urinary and bowel symptoms, impairment due to repeated treatments and sexual functioning.

 - EORTC-BLS24 questionnaire for patients treated with transurethral resection of the bladder

 - EORTC-BLM30 questionnaire for those who underwent cystectomy

Self-administered questionnaires