Table 3.

Humanistic Burden

Author/Year	Study Details	Questionnaire Used	Instrument Measurement	Observations
Feuerstein (2019)83	US Cohort study Patients with MIBC scheduled for RC Data collected within 4 weeks of scheduled RC N=155	EORTC-QLQ-C30 EORTC-QLQ-BLM30	HRQOL for patients treated with NAC prior to RC	No significant difference regarding general HRQOL between NAC-treated and untreated patients prior to RC Marginally better emotional and mental health in patients with vs without NAC
Kretschmer (2020)84	Germany Prospective cohort study Patients with MIBC undergoing RC (IC and ONB) Follow-up data collected 3, 12, and 24 months after RC N=134	EORTC-QLQ-C30	Quality of life of cancer patients	2 years postoperatively general HRQOL was greater in the ONB patient cohort compared with the IC cohort Good general HRQOL was reached by 32.4% of patients in the IC cohort and 61.1% of patients in the ONB cohort Significantly better physical and role functioning in the ONB patient cohort in comparison with the IC cohort
Schulz (2021)85	Germany Cohort study Patients with MIBC undergoing RC (IC and ONB) Follow-up period from 3 months to 12 years after receiving RC N=280	EORTC-QLQ-C30 ICIQ-SF	Impact of symptoms of incontinence on outcome	Decision regret was reported among the ONB patient cohort following ONB urinary diversion. This was reported between the 4- and 6-year time points, without any correlation with general HRQOL
Volz (2022)86	Germany Cohort study Patients with MIBC scheduled for RC (IC and ONB) Data collected preoperatively and at 3, 12, 24, 36, and 48 months of follow-up N=246	EORTC-QLQ-C30 EORTC-QLQ-BLM-30 FACT-Bl	Quality of life of cancer patients Impact of RC and reconstructive surgery in terms of HRQOL Bladder cancer-specific symptoms	No statistical differences between IC and ONB patient cohorts postoperatively in terms of EORTC-QLQ-BLM-30 assessments Significant differences between IC and ONB patient cohorts regarding preoperative EORTC-QLQ-C30 symptoms and functioning scores were reported including increased fatigue and appetite loss, which diminished during the postoperative time course No significant differences across IC and ONB patients at various time points, up to 48 months
Bahlburg (2023)87	Germany Cohort study Patients who had received RC and now receiving inpatient rehabilitation after RC (IC and ONB) Follow-up data collected 4 weeks, 6 and 12 months after RC N=842	QSC-R10 EORTC-QLQ-C30 EORTC-QLQ-BLM-30	Psychosocial distress and quality of life in cancer patients	HRQOL improved during follow-up after RC An average of 40% of all participants (consisting of IC and ONB cohorts) reported high psychosocial distress at all time points, up to 1 year

Abbreviations: EORTC-QLQ-C30, European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30; EORTC-QLQ-BLM-30, European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Muscle-Invasive Bladder Cancer 30; FACT-Bl, Functional Assessment of Cancer Therapy–Bladder; HRQOL, health-related quality of life; IC, ileal conduit; ICIQ-UI SF, International Consultation on Incontinence Questionnaire–Urinary Incontinence Short Form; MIBC, muscle-invasive bladder cancer; NAC, neoadjuvant chemotherapy; ONB, orthotopic neobladder; QSC-R10, Questionnaire on Stress in Cancer Patients; RC, radical cystectomy.