As reported by Sivendran et al in the Journal of Oncology Practice, half of patients in a large community-based cancer institute did not know their stage of cancer, and one-third did not know of their cancer-free/in-remission status.
The study involved 208 adult patients treated at the cancer institute within the 12 months prior to December 1, 2014, who completed the Consumer-Based Cancer Care Value Index field survey. Stage at diagnosis and cancer status were obtained from electronic medical records and compared with patient-reported responses.
Concordance of Patient Report With Documented Status
For 51% of patients, self-reported cancer stage matched the documented stage. Concordance was 72% for patients with stage IV disease, 85% for those with stage 0 disease, 56% for patients with stage I disease, 36% for those with stage II disease, and 62% for patients with stage III disease (P = .053 for discordance for stage IV vs stages I to III). Patients who were concordant for cancer stage at diagnosis were more likely to be female (P = .001), aged < 65 years (P = .01), have an annual income > $60,000 (P = .03), and have a higher level of education (P = .02).
Overall, 66% of patients who were free of cancer or in remission correctly (n = 165) identified their status; 7% reported they were not free of cancer or in remission, and 24% were not sure. Among patients who were not free of cancer or in remission, 60% correctly identified their status, 16% reported they were free of cancer/in remission, and 19% were not sure.
The investigators concluded: “Our findings confirm that more than one quarter of patients with advanced cancer have poor illness understanding and highlight that an even greater number of patients with early stage I to III cancer have poor illness understanding. These observations highlight the need to improve illness understanding for patients across the entire cancer continuum.”
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