Abstract
BackgroundTo 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.MethodsThe 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.ResultsOf 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.ConclusionThe 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.
Highlights
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
Hospital-based cancer registry We selected a representative sample of adult patients diagnosed with cancer in 2016 who first commenced their treatment at hospitals that operated hospital-based cancer registries (HBCRs)
In reference to the population-based cancer registry in Japan, 70–80% of all patients with cancer in Japan are included in the HBCR [8]
Summary
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. A patient experience survey is a powerful tool used in assessing the process of care delivery, as well as voicing and including patients’ opinions in the policy-making. The survey was designed to evaluate patients’ experience regarding various aspects of disease trajectories, such as their experiences with diagnosis, second opinion, fertility preservation, communication with medical professionals, utilizing existing resources, and information provision, from cancer onset to early survivorship. The second survey was modified to include additional aspects of cancer care stipulated in the new policy such as supporting AYA patients, promoting patient-centered care, promoting team-based care, and living with dignity, so as to improve its validity and reliability. Far, the detailed results and analysis from this survey have not been published
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