Objectives: a) To determine how much patients with recently diagnosed lung cancer know about their illness and its treatment, and b) to find out if doctors know what their patients know and what they don't.
Patients and methods: One hundred patients with recently diagnosed lung cancer, who were undergoing radiotherapy or chemotherapy, were interviewed to determine their view of their diagnosis, the extent of the cancer, the intent of treatment, and the risks and benefits of treatment. Their attending physicians' view were elicited contemporaneously, using a self-administered questionnaire. The principle outcome measure of the study was the level of agreement between the views of the patients and the doctors about the disease, the treatment, and the prognosis. Concordance between doctors' and patients' views was expressed in terms of percentage agreement, and Kappa (kappa).
Results: Ninety-nine percent of the patients knew that they had lung cancer. Sixty-four percent (64%) agreed with their doctor about the extent of the disease (kappa = 0.48). Most of those who disagreed underestimated the extent of their cancer. Seventy-two percent (72%) agreed with their doctor about the intent of treatment (kappa = 0.49). Thirty-six percent (36%) agreed with their doctors about their probability of cure, (kappa = 0.17): most of those who disagreed systematically overestimated it. Sixty-eight patients were receiving palliative treatment. Of these, 56% agreed with their doctor about the probability of symptomatic benefit (kappa = 0.42), but only 14% agreed with their doctor about the probability that the treatment would prolong life (kappa = 0.06). Doctors frequently failed to recognize their patients' misconceptions about the intent of treatment and the prognosis.
Conclusion: Many patients did not understand their situation well enough to make a truly autonomous treatment decision, and their doctors often failed to recognize this.