Differences in experiences of patients with advanced cancer in Japan from 3 to 6 years after diagnosis.

Purpose: Coping with cancer presents significant challenges, especially for those with advanced-stage and long-term survival. However, research on advanced-stage cancer experiences in Japan remains limited. This study analyzed how patient experiences with advanced-stage cancer/long-term survival varied across different diagnosis periods.

Methods: We examined two groups of patients with advanced cancer diagnosed in 2013 and 2016 using data from the Patient Experience Survey, a nationwide survey of cancer patients in Japan in 2019. Weighted analysis was used to estimate the distribution of patient experiences in the representative population. We compared the experiences of patients diagnosed with advanced-stage disease in 2016 (newer diagnosis group) and 2013 (earlier diagnosis group).

Results: We analyzed 1584 participants in the newer diagnosis group and 412 in the earlier diagnosis group, with response rates of 30.8% and 43.0% respectively (P < 0.01). The earlier group had more proxy responses (38.0% vs. 43.2%). Survey response distribution was similar across groups; however, earlier diagnosis patients reported worse access to treatment information, lower satisfaction, and less positive post-treatment experiences than did newer patients. However, when considering respondent type, patient responses were consistent across years, whereas proxy responses were more negative.

Conclusions: Differences in survey timing and response types significantly impact the reported patient experiences. Policymakers should consider these factors when designing cancer control strategies to support patients and families.

Implications For Cancer Survivors: Policymakers should use these findings to enhance cancer control strategies, addressing the distress of patients and families affected by advanced and long-term cancer.