Bridging the Gap: Evaluating Discrepancies in Disease Knowledge and Expectations between Patients and Physicians in Hematologic Malignancies

Background:

The management of patients with hematologic malignancies involves a variety of therapeutic options, each with distinct goals and probabilities of cure. Studies have revealed a discordance, exceeding 80%, between patients' and doctors' perceptions about the likelihood of cure, with patients often exhibiting a more optimistic outlook. Furthermore, differences in priorities and expectations between physicians and patients can contribute to this disparity. However, there is limited information on factors associated with increased doctor-patient discrepancy.

Methods:

The aim of this cross-sectional study is to determine the concordance between patients and their physicians on issues related to their disease knowledge, expectations of cure, and treatment priorities at a tertiary care center in a resource-limited academic center. Participants included patients aged 18 years and older with a diagnosis of acute leukemia (AL), chronic leukemia (CL), lymphoma, or myelodysplastic syndrome (MDS) currently undergoing active treatment. Data were collected through surveys conducted with both the patients and their attending physicians. In cases where a resident/fellow attended the patient, both the resident and the attending physician in charge of the clinic were interviewed. Concordance of expectations between doctors and patients and correlation with clinical and sociodemographic variables were analyzed. Discrepancy between doctor and patient was considered when the difference in perceived probability of cure exceeded 20%, with the probability stratified every 10% (ranging from <10% to >90%).

Results:

A total of 113 patients were interviewed, comprising 33.6% patients with lymphomas, 30.1% with AL, 20.4% with CL, and 15.9% with MDS (see Table 1). Among the respondents, 57.5% correctly identified the name of their disease, 31.9% had partial knowledge, and 10.6% were unaware. Factors associated with complete knowledge of the disease name included age <50 years (72.0% vs. 46.0%, odds ratio (OR) 0.33 (95% CI 0.15-0.73), p=0.013) and diagnosis (AL 76.5%, CL 56.5%, MDS 55.6%, lymphoma 42.1 %, p=0.05). Only 65.5% identified their disease as malignant, while 15.0% considered it non-malignant, and 19.5% were unsure or declined to respond. A lower proportion of patients <50 years (51.4%, p=0.003) and those with CL or MDS (MDS 27.7%, CL 52.2%, AL 73.5% and lymphomas 84.2%; p<0.001) viewed their disease as malignant.

Regarding self-perceived knowledge of the disease, 83% of patients considered their information to be sufficient or complete, while 17% perceived it as inadequate or incomplete. In contrast, doctors believed that 65.8% of patients had sufficient or complete knowledge, and 34.2% had little or very incomplete information. Concordance between patients and attending physicians was 63.4% for the perception of disease knowledge and 66.7% between patients and the residents directly attending to them.

Among the 89 patients who provided information on their probability of cure, the concordance with the attending physician was 20.2%. In 40.4% of the cases, the doctor believed the probability of cure was <10%, whereas no patient perceived their probability of cure as <10%, and only one patient (0.9%) considered it to be between 10-19%. Agreement on the perception of probability of cure was higher for patients with acute leukemia (37.0%) and lymphoma (19.4%) compared to those with chronic leukemia (12.5%) and MDS (0%), p = 0.027. Patients with concordance had a median age of 39 years (18-82), while those with discordance had a median age of 52 (18-89), p = 0.018; with an OR for concordance in those > 50 years of 4.783 (95% CI 1.43-15.99) (see Table 1).

Figure 1 illustrates the treatment priorities for patients and physicians.

Conclusions: This study highlights a significant discrepancy between patients' and physicians' expectations regarding prognosis in hematologic malignancies, despite the majority of patients considering their disease knowledge to be sufficient or complete. Addressing expectations and treatment priorities should be integral to the therapy selection process and warrant more thorough discussion in outpatient clinics.