NDLI: Validity of patient-reported information: agreement rate between patient reports and registry data

Content Provider	Springer Nature : BioMed Central
Author	Watanabe, Tomone Ichinose, Yuichi Toida, Tsutomu Higashi, Takahiro
Abstract	Background The accuracy of patient-reported clinical information, including cancer stage, is not well understood. This study aims to evaluate the agreement between patient-reported survey data and clinical information recorded in hospital-based cancer registries (HBCR). Methods A total of 730 patients from 166 hospitals in Japan were randomly selected and informed that their survey responses would be validated against HBCR data. Demographic details, including age, sex, cancer stage, and cancer site, were recorded and compared with clinical data from the HBCR. Agreement rates between patients’ self-reported demographic and clinical data and the corresponding HBCR records were analyzed. Logistic regression analysis was conducted to identify factors associated with accurate reporting of cancer stage information. Results Agreement rates for age, sex, and cancer site were 99.4%, 99.8%, and over 90% across all cancer sites, respectively. The agreement rate for cancer stage reporting was 49.9%. Patients with stage IV cancer had the highest agreement rate at 68.4%. Patients under 75 years of age and those with specific cancer types demonstrated higher odds of reporting data consistent with HBCR records. Conclusions For cancer stage data, relying on more credible sources, such as cancer registries, is recommended over patient-reported information to ensure accuracy.
Related Links	https://bmchealthservres.biomedcentral.com/counter/pdf/10.1186/s12913-025-12324-5.pdf
Ending Page	8
Page Count	8
Starting Page	1
File Format	HTM / HTML
ISSN	14726963
DOI	10.1186/s12913-025-12324-5
Journal	BMC Health Services Research
Issue Number	1
Volume Number	25
Language	English
Publisher	BioMed Central
Publisher Date	2025-01-31
Access Restriction	Open
Subject Keyword	Public Health Health Administration Health Informatics Nursing Research Cancer staging Cancer registries Japan Demographics Patients
Content Type	Text
Resource Type	Article
Subject	Health Policy

Sl.	Authority	Responsibilities	Communication Details
1	Ministry of Education (GoI), Department of Higher Education	Sanctioning Authority	https://www.education.gov.in/ict-initiatives
2	Indian Institute of Technology Kharagpur	Host Institute of the Project: The host institute of the project is responsible for providing infrastructure support and hosting the project	https://www.iitkgp.ac.in
3	National Digital Library of India Office, Indian Institute of Technology Kharagpur	The administrative and infrastructural headquarters of the project	Dr. B. Sutradhar bsutra@ndl.gov.in
4	Project PI / Joint PI	Principal Investigator and Joint Principal Investigators of the project	Dr. B. Sutradhar bsutra@ndl.gov.in Prof. Saswat Chakrabarti will be added soon
5	Website/Portal (Helpdesk)	Queries regarding NDLI and its services	support@ndl.gov.in
6	Contents and Copyright Issues	Queries related to content curation and copyright issues	content@ndl.gov.in
7	National Digital Library of India Club (NDLI Club)	Queries related to NDLI Club formation, support, user awareness program, seminar/symposium, collaboration, social media, promotion, and outreach	clubsupport@ndl.gov.in
8	Digital Preservation Centre (DPC)	Assistance with digitizing and archiving copyright-free printed books	dpc@ndl.gov.in
9	IDR Setup or Support	Queries related to establishment and support of Institutional Digital Repository (IDR) and IDR workshops	idr@ndl.gov.in

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