Patient-Physician Communication about Hematologic Malignancies.
Authors: Lee Stephanie J. , Sullivan Amy M. , Back Anthony L. , Block Susan D. , Goldman Roberta , Tulsky James A. , Alexander Stewart C. , Kirkpatrick Tarrah , Stewart Susan K. , Weeks Jane C. 
Published: October 2019

Purpose: Previous studies of patient-physician communication have noted that patients (pts) want to know “as much information as possible” about their diseases, but very little is known about successful ways to communicate this information.

Patients and Methods: We report interim results of an ongoing, longitudinal study of patient-physician communication among people with hematologic malignancies. 83 pts seeing 15 physicians were studied at the Dana-Farber Cancer Institute (DFCI), Boston, MA between 9/02-9/03. After informed consent, subjects were interviewed qualitatively and quantitatively prior to their consultations, the consultation was audiotaped, and pts were interviewed between 1–10 days after their consultations. 83/176 (47%) of invited patients participated.

Results: Interim results from the pre-consultation and post-consultation interviews for evaluable pts (n=72) are presented. Overall, the population was well-educated (53% college graduates), married (74%), White (81%), and reported high social support and relatively little anxiety and depression. The median age was 58 yrs (range 20–80 yrs), 46% were female, and the median time from diagnosis to study was 69 days (range 7–1512 d). The primary diagnoses were non-Hodgkin’s lymphoma (n=22, 31%) and multiple myeloma (n=21, 29%). Most wanted to be an equal partner in decision making (41%) or take primary responsibility for the decision (36%). Almost everyone wanted to discuss treatment options, treatment goals, and physician treatment recommendations (96–100%), but fewer wanted to discuss average patient survival (86%), likelihood of treatment success (70%), likelihood of cure (60%) or clinical trials (49%). 70% wanted prognostic information in percentages and 64% wanted to hear about previous pts, while fewer desired fractions (43%) or qualitative expressions of probability (44%). When asked to estimate prognosis (chance of cure and life expectancy) before the consultation, pts were much more optimistic compared to their physicians. After the consultation, most pts’ prognostic estimates were unchanged although a few (14–24%) became more optimistic and 7–19% became less optimistic. Most pts were satisfied with their consultations and “very likely” to recommend their physicians to other pts (88%). Pts were completely (69%) or somewhat (28%) satisfied with the amount of information they were given. Most reported the same or improved depression, anxiety and hope after their consultations.

Conclusions: Patients in our study are interested in most but not all information about their diseases. In particular, they want information about treatment options and recommendations, but less information about the likely course of the disease. While physicians appear to be communicating with patients in ways that result in high degrees of satisfaction, maintain hope, and do not diminish patients’ sense of depression or anxiety, patients are retaining their overoptimistic prognostic expectations after their consultations.