Most patients offered cystectomy after BCG refuse it, mainly over quality of life and stoma fears

Design

Multinational cross-sectional physician survey (Adelphi Disease Specific Programme)

Population

2,583 patients with high-risk non-muscle-invasive bladder cancer reported by 359 physicians in 8 countries

Primary outcome

Use of and reasons for refusing radical cystectomy

Effect

Cystectomy offered to 20% of BCG-treated patients; 68% of those refused (QoL 87%, stoma 60%, safety 37%)

This multinational cross-sectional survey, from China, Japan, Canada, France, Germany, Italy, Spain and the UK, collected physician-reported data on 2,583 patients with high-risk non-muscle-invasive bladder cancer from 359 urologists and oncologists. Mean age was 68.9 years, 74% were men and 68% had T1 high-grade tumours.

BCG was first-line in 58%. Among patients with recurrent disease, radical cystectomy was used in 8% at second line, 7% at third and 8% at fourth. Among 825 patients who received BCG with further data, cystectomy was offered to 169 (20%), and 115 of these (68%) refused. The reasons were quality-of-life concerns (87%), unwillingness to have a stoma (60%) and surgical safety concerns (37%).

The data are physician-reported and cross-sectional, so selection and recall may affect them. They indicate that guideline-recommended cystectomy is often not what patients choose, which is why shared decision-making and bladder-preserving options matter.

• Cystectomy was offered to 20% of BCG-treated patients, and 68% of those refused.
• Reasons were quality of life (87%), stoma (60%) and safety (37%).
• Only 7% to 8% of recurrent cases had cystectomy at later lines.
• Prepare decision aids and stoma-nurse input before the cystectomy conversation.
• Discuss options and risks of delay openly with patients.

Why it matters

It exposes a gap between guideline recommendations and what patients accept.

Don't overread it

A physician-reported survey cannot show whether refusing cystectomy changes outcomes.

The statistics, in plain English

A refusal rate of 68% among 169 patients offered surgery is a descriptive figure from physician reports. It does not show what patients would choose with better information or with different bladder-preserving options available.

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