Watanabe T, et al. J Gynecol Oncol. 2017 Dec;29:e83. https://doi.org/10.3802/jgo.2018.29.e83

Background: To elucidate the experience of patients with cancer from diagnosis to early survivorship in Japan using a nationwide questionnaire survey, and to inform the current progress of the cancer control programs. Methods: The survey was sent to a representative sample of adult patients with cancer identified from the national database of hospital-based cancer registries. The patients’ responses were compared across three groups: patients with rare cancers, patients aged < 40 years, and patients with non-rare cancers aged ≥40 years. Results: Of 20,488 patients invited to participate in the survey, 8935 (43.6%) responded. Respondents reported an average score of 7.9 out of 10 on global ratings of care. Patients with rare cancers experienced a longer time to diagnosis but the shortest time from diagnosis to first treatment (p < 0.05). Patients aged < 40 years rated worse for the majority of the survey items, especially on items that related to communication with medical staff and items referring to early survivorship. Conclusion: The care experienced by patients with cancer in Japan varies on the basis of age group and cancer type. Efforts should be directed to ensuring prompt access to diagnostic facilities for patients with rare cancers and providing sufficient support to younger patients.

Reports on the expenditure of cancer treatments per patient using comprehensive data remain unavailable in Japan. This study aimed to use Japan’s cancer registry data and health service utilization data for evaluating the disease-specific, per-patient costs of five major cancers—stomach, lung, colorectal, liver, and breast cancers. We used a database linking the 2017 data from a hospital-based cancer registry and the health service utilization data from the Diagnosis Procedure Combination survey. All patients who started their first treatment course at each hospital were included. The costs were calculated using the total volume of the health services provided and the unit fee information included in the data. We analyzed 304,698 patients. Lung cancer had the highest healthcare cost per-patient for the first year of diagnosis and the longest median hospitalization duration. Conversely, breast cancer showed the lowest cost and the shortest median hospitalization duration. However, in the first month after diagnosis, colorectal cancer showed the highest cost. Subsequently, the gaps between the costs of the five common cancers drastically diminished. The cancer type having the longest hospitalization duration had the highest overall healthcare resource utilization costs. This information is essential for care planning and research studies.

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.

Background The accuracy of the patient-reported clinical data remains largely unknown. This study aims to assess the level of agreement between the responses of patients in surveys and actual information obtained from hospital-based cancer registries (HBCR). Methods A total of 1,671 patients from 166 hospitals across Japan were randomly selected and invited to participate in the survey, and primary data of a nationwide survey was analyzed, which was collected from January 2019 to July 2019. A group of patients were informed prior to the survey conduction that the validity of their responses would be assessed in correlation with the HBCR. Patient demographics such as age, sex, cancer stage, and cancer sites were noted, and survey responses were compared with the clinical information extracted from hospital-based cancer registries. The agreement rates between the patients’ self-reported demographic information and the information from the registry was compared. Further, logistic regression was used to identify the factors contributing to the accurate reporting of cancer stage information. Results It was noted that although patients’ responses regarding age, sex, and cancer site were quite accurate, the agreement rate between patients’ responses and cancer stages mentioned in hospital-based cancer registries was approximately 48.1%. The stage-stratified agreement rate was the highest (67.7%) for stage IV cancers. Younger and female patients were found to have more accurate information than older and male patients. Conclusions Although utilizing patient-driven information in the policy-making process is helpful, researchers and policy makers must verify the accuracy of this information.