What is your understanding of your illness? A communication tool to explore patients' perspectives of living with advanced illness.

BACKGROUND: Provider communication courses and guidelines stress the use of open-ended questions, such as "what is your understanding of your illness?," to explore patients' perceptions of their illness severity, yet descriptions of patients' responses are largely absent from the current literature. These questions are most often used by clinicians as they deliver bad news to cancer patients or address code status at the end of life, but have not been well studied in other diseases or earlier in the disease course. OBJECTIVES: To explore the responses of patients living with serious illness to the question "what is your understanding of your illness?" and to identify similarities and differences in themes and language used by cancer and non-cancer patients to discuss their illness. DESIGN: We conducted a qualitative analysis of patients' responses to "what is your understanding of your illness?" PARTICIPANTS: Two hundred nine subjects, 69 with cancer, 70 CHF, and 70 COPD, who had an estimated 50 % 2-year survival. Mean age was 66 years. APPROACH: Responses were recorded at the baseline interview of a larger, longitudinal study of patients with advanced life-limiting illness (cancer, CHF, or COPD). After thematic content analysis using open coding, investigators conducted pattern analysis to examine variation associated with diagnosis. RESULTS: We identified five major themes: naming the diagnosis or describing the pathophysiology, illness history, prognosis, symptoms, and causality. Responses varied by diagnosis. Cancer patients' responses more often included specific diagnostic details and prognosis, while non-cancer patients referenced symptoms and causality. CONCLUSIONS: Patients' responses to the open-ended question "what is your understanding of your illness?" can provide the clinician with important information and insight on how they view their illness in a non-acute setting. The identified themes can serve as a foundation for patient-centered communication strategies as we strive to build a mutual understanding of illness with patients.

Duke Scholars

Author Kimberly Sherell Johnson Medicine, Geriatrics

Author Karen E. Steinhauser Population Health Sciences