Study Finds Poor Understanding of Illness in Patients With Advanced Cancer


Key Points

  • Few patients exhibited accurate knowledge of the nature of their illness.
  • Increased knowledge score was associated with reporting of recent and recent and past discussions with oncologists.

Few patients with advanced cancer and a short life expectancy have an accurate understanding of their illness, according to a study reported in the Journal of Clinical Oncology by Epstein et al.

Study Details

The study involved 178 patients from 9 U.S. cancer centers who had advanced cancers refractory to chemotherapy and were expected to die within 6 months by oncologists. Patients were interviewed before and after a visit at which cancer restaging scan results were discussed. Patient understanding of illness was based on answers to four questions addressing terminal illness acknowledgment, knowledge of their incurable disease status, knowledge of the advanced stage of their disease, and expectation to live months as opposed to years.

Level of Understanding

Prior to the restaging scan visit, 9 (5%) of 178 patients had a completely accurate illness understanding indicated by an illness understanding score of 4 (correct answers to the 4 questions), with scores being 3 for 24%, 2 for 26%, 1 for 27%, and 0 for 18%. Median time between pre- and post-scan interviews was 6 weeks. At the post-scan interview, illness understanding scores were 4 for 7%, 3 for 25%, 2 for 28%, 1 for 26%, and 0 for 15%.

As reported at the post-scan visit, only recent discussions (most recent oncology visit) of prognosis/life expectancy with their oncologist were reported by 18 patients (10%), with 68 (38%) reporting only past discussions, 24 (13%) reporting both recent and past discussions, and 68 (38%) reporting no discussions. Improved illness understanding score was associated with recent only (P = .002) and recent and past (P = .028) discussions of prognosis/life expectancy with their oncologist

The investigators concluded: “Patients with advanced cancer who report recent discussions of prognosis/life expectancy with their oncologists come to have a better understanding of the terminal nature of their illnesses.”

The study was supported by the National Cancer Institute, the National Palliative Care Research Center, and the National Institute of Minority Health Disparities.

Holly G. Prigerson, PhD, of NewYork–Presbyterian Hospital, is the corresponding author of the Journal of Clinical Oncology 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®.