Understanding of Stage and Cancer Status Among Patients in a Community-Based Cancer Institute


Key Points

  • Self-reported stage matched documented stage for 51% of patients in a large community-based cancer institute.
  • A total of 66% of patients free of cancer/in remission correctly identified their status.

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.

Study Details

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.”

Shanthi Sivendran, MD, of Penn Medicine at Lancaster General Health, Ann B. Barshinger Cancer Institute, is the corresponding author of the Journal of Oncology Practice article.

The content in this post has not been reviewed by the American Society of Clinical Oncology, Inc. (ASCO®) and does not necessarily reflect the ideas and opinions of ASCO®.