A nationwide survey of awareness and understanding of NUT carcinoma among clinicians in China

NUT carcinoma is a rare and highly aggressive malignancy defined by NUTM1 gene rearrangement and is frequently misdiagnosed because of non-specific clinicopathological features. We assessed clinicians’ awareness and understanding of NUT carcinoma in China. We conducted a nationwide cross-sectional online survey (December 29, 2023–March 27, 2024) distributed via Wenjuanxing and professional networks. Eligible respondents were physicians and in-service trainees practicing in China. Responses with unclassifiable key information (e.g. city/department) were excluded. The questionnaire assessed self-reported awareness across five domains (clinical manifestations, diagnostic approaches, treatment, prognosis, and common NUTM1 fusion partners) and awareness of NUT carcinoma–related organizations. Descriptive statistics were reported as n (%). Multivariable ridge logistic regression with five-fold cross-validation was used to explore associated factors, with Bonferroni correction for multiple comparisons. Among 2222 returned questionnaires, 7 were excluded, leaving 2215 for analysis; 81.2% of respondents were from tertiary hospitals. Overall awareness was low: 1445 (65.2%) reported no awareness of any domain, and awareness rates were 631 (28.5%) for clinical manifestations, 552 (24.9%) for diagnostic approaches, 417 (18.8%) for treatment, 478 (21.6%) for prognosis, and 214 (9.7%) for NUTM1 fusion partners. Only a small minority reported awareness across all assessed domains (approximately 7%). Awareness of related organizations was also limited: 1523 (68.8%) reported knowing none; 664 (30.0%) knew the “NUT Carcinoma Genetic Diagnosis Working Group” of the Chinese Anti-Cancer Association, 224 (10.1%) knew the NUT Carcinoma Registry, and 214 (9.7%) knew the European Cooperative Study Group for Pediatric Rare Tumors. In multivariable models, oncology and pathology were associated with higher awareness, particularly for diagnostic approaches (oncology OR 2.04, 95% CI 1.67–2.51; pathology OR 9.38, 95% CI 6.40–13.21) and prognosis (oncology OR 2.22, 95% CI 1.82–2.76; pathology OR 4.71, 95% CI 2.95–7.22), and with lower odds of reporting “no awareness” (oncology OR 0.52, 95% CI 0.43–0.63; pathology OR 0.15, 95% CI 0.10–0.21) (all Bonferroni-corrected p < 0.001). Most surveyed clinicians reported limited awareness of NUT carcinoma, including in tertiary hospitals. Practical strategies should prioritize training for pathology services and tumor-related specialties and strengthen referral pathways and access to NUT immunohistochemistry and molecular diagnostics to reduce missed or delayed diagnoses.

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Publication Details

Journal
BMC Health Services Research
Published
2026-03-02
DOI
https://doi.org/10.1186/s12913-026-14236-4
Primary Topic
Protein Degradation and Inhibitors
Type
article
Field-Weighted Citation Impact
0.00
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article

A nationwide survey of awareness and understanding of NUT carcinoma among clinicians in China

Dan Yang, M. Yin, M. Zhang, Zhuomiao Ye et al.
BMC Health Services Research
Protein Degradation and Inhibitors
article

A nationwide survey of awareness and understanding of NUT carcinoma among clinicians in China

Dan Yang, M. Yin, M. Zhang, Zhuomiao Ye, Weiying Liu, Xin Li
article en

Abstract

NUT carcinoma is a rare and highly aggressive malignancy defined by NUTM1 gene rearrangement and is frequently misdiagnosed because of non-specific clinicopathological features. We assessed clinicians’ awareness and understanding of NUT carcinoma in China. We conducted a nationwide cross-sectional online survey (December 29, 2023–March 27, 2024) distributed via Wenjuanxing and professional networks. Eligible respondents were physicians and in-service trainees practicing in China. Responses with unclassifiable key information (e.g. city/department) were excluded. The questionnaire assessed self-reported awareness across five domains (clinical manifestations, diagnostic approaches, treatment, prognosis, and common NUTM1 fusion partners) and awareness of NUT carcinoma–related organizations. Descriptive statistics were reported as n (%). Multivariable ridge logistic regression with five-fold cross-validation was used to explore associated factors, with Bonferroni correction for multiple comparisons. Among 2222 returned questionnaires, 7 were excluded, leaving 2215 for analysis; 81.2% of respondents were from tertiary hospitals. Overall awareness was low: 1445 (65.2%) reported no awareness of any domain, and awareness rates were 631 (28.5%) for clinical manifestations, 552 (24.9%) for diagnostic approaches, 417 (18.8%) for treatment, 478 (21.6%) for prognosis, and 214 (9.7%) for NUTM1 fusion partners. Only a small minority reported awareness across all assessed domains (approximately 7%). Awareness of related organizations was also limited: 1523 (68.8%) reported knowing none; 664 (30.0%) knew the “NUT Carcinoma Genetic Diagnosis Working Group” of the Chinese Anti-Cancer Association, 224 (10.1%) knew the NUT Carcinoma Registry, and 214 (9.7%) knew the European Cooperative Study Group for Pediatric Rare Tumors. In multivariable models, oncology and pathology were associated with higher awareness, particularly for diagnostic approaches (oncology OR 2.04, 95% CI 1.67–2.51; pathology OR 9.38, 95% CI 6.40–13.21) and prognosis (oncology OR 2.22, 95% CI 1.82–2.76; pathology OR 4.71, 95% CI 2.95–7.22), and with lower odds of reporting “no awareness” (oncology OR 0.52, 95% CI 0.43–0.63; pathology OR 0.15, 95% CI 0.10–0.21) (all Bonferroni-corrected p < 0.001). Most surveyed clinicians reported limited awareness of NUT carcinoma, including in tertiary hospitals. Practical strategies should prioritize training for pathology services and tumor-related specialties and strengthen referral pathways and access to NUT immunohistochemistry and molecular diagnostics to reduce missed or delayed diagnoses.

BMC Health Services Research
Chongqing University (CN), Chongqing Three Gorges Central Hospital (CN), Chongqing Cancer Hospital (CN), Chongqing Three Gorges University (CN)
Openalex Percentile: Top 38%
Protein Degradation and Inhibitors
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