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

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 7...

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Main Authors: Tomone Watanabe, Yuichi Ichinose, Tsutomu Toida, Takahiro Higashi
Format: Article
Language:English
Published: BMC 2025-01-01
Series:BMC Health Services Research
Subjects:
Online Access:https://doi.org/10.1186/s12913-025-12324-5
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author Tomone Watanabe
Yuichi Ichinose
Tsutomu Toida
Takahiro Higashi
author_facet Tomone Watanabe
Yuichi Ichinose
Tsutomu Toida
Takahiro Higashi
author_sort Tomone Watanabe
collection DOAJ
description 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.
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spelling doaj-art-c61ace01d24c47769d0d7dedd4cd85382025-02-02T12:14:17ZengBMCBMC Health Services Research1472-69632025-01-012511810.1186/s12913-025-12324-5Validity of patient-reported information: agreement rate between patient reports and registry dataTomone Watanabe0Yuichi Ichinose1Tsutomu Toida2Takahiro Higashi3Division of Health Services Research, Institute for Cancer Control, National Cancer CenterDivision of Health Services Research, Institute for Cancer Control, National Cancer CenterDepartment of Economics, Dokkyo UniversityDivision of Health Services Research, Institute for Cancer Control, National Cancer CenterAbstract 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.https://doi.org/10.1186/s12913-025-12324-5Cancer stagingCancer registriesJapanDemographicsPatients
spellingShingle Tomone Watanabe
Yuichi Ichinose
Tsutomu Toida
Takahiro Higashi
Validity of patient-reported information: agreement rate between patient reports and registry data
BMC Health Services Research
Cancer staging
Cancer registries
Japan
Demographics
Patients
title Validity of patient-reported information: agreement rate between patient reports and registry data
title_full Validity of patient-reported information: agreement rate between patient reports and registry data
title_fullStr Validity of patient-reported information: agreement rate between patient reports and registry data
title_full_unstemmed Validity of patient-reported information: agreement rate between patient reports and registry data
title_short Validity of patient-reported information: agreement rate between patient reports and registry data
title_sort validity of patient reported information agreement rate between patient reports and registry data
topic Cancer staging
Cancer registries
Japan
Demographics
Patients
url https://doi.org/10.1186/s12913-025-12324-5
work_keys_str_mv AT tomonewatanabe validityofpatientreportedinformationagreementratebetweenpatientreportsandregistrydata
AT yuichiichinose validityofpatientreportedinformationagreementratebetweenpatientreportsandregistrydata
AT tsutomutoida validityofpatientreportedinformationagreementratebetweenpatientreportsandregistrydata
AT takahirohigashi validityofpatientreportedinformationagreementratebetweenpatientreportsandregistrydata