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.
Background: The Japan Nurses’ Health Study (JNHS) is a large-scale, nationwide prospective cohort study of female nurses. This study aimed to examine the validity of self-reported diagnosis of cancer among the JNHS cohort members (N=15,019). Methods: For women who reported any diagnosis of five cancers (stomach, colorectal, liver, lung and thyroid) in the biennial follow-up surveys, an additional outcome survey, medical facility survey, and confirmation of death certificate (DC) were conducted. The JNHS Validation Study Committee (referred to as “the committee”) made a final decision on the reported outcomes. To examine the validity of self-reported diagnosis of cancer, the positive predictive value (PPV) was calculated using the committee’s decision as the gold standard. To examine the validity of the committee’s decision based on self-reports and DCs, PPV was calculated using physician-reported information as the gold standard. Results: The PPV of self-reported diagnosis in the biennial follow-up surveys was 77.8% for stomach, 66.2% for colorectal, 41.7% for liver, 60.2% for lung, and 64.6% for thyroid cancer. The corresponding PPVs in the additional outcome survey were 96.2%, 80.7%, 62.5%, 82.5%, and 96.9%, respectively. The PPV of the committee’s decision was 100% for stomach, 87.5% for colorectal, 94.7% for lung, and 100% for thyroid cancer (data not available for liver cancer). The proportion of DC-only cases among committee-defined cases was below 10% for all cancers except liver cancer (28.6%). Conclusions: The validity of identifying cancer diagnosis based on self-reported information in the JNHS was favorable for stomach, colorectal, lung and thyroid cancer.
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