OBJECTIVES: The National Health Council’s, Patient Experience Mapping Toolbox (PEMT) assists health economics and outcomes researchers (HEOR) in the acquisition of patient experience data (PED) to understand patients’ experiences in the health care ecosystem from before they receive a diagnosis to living with their diagnosis. Generating an informed decision and determining which treatment options are best for chronic disease patients is multifaceted. To better evaluate treatment options in the context of patients’ priorities, goals, and unique circumstances, we asked patients what factors are important when deciding among treatment options.

METHODS: From June 2022-August 2022, twenty-five key informant interviews were conducted with patients across various chronic disease areas (i.e., depression, atrial fibrillation, rheumatoid arthritis, asthma, etc.). Each interview was one hour and conducted via Zoom. This phenomenological study employed an inductive qualitative analysis to ascertain the perspectives of patients. Themes were derived on two topics: 1) treatment tradeoffs and 2) what questions about treatments and tradeoffs are most important to ask a health care provider.

RESULTS: For Treatments and Tradeoffs, three themes of importance were identified: 1) Insurance coverage and out-of-pocket costs, 2) Side effects and risks, and 3) Treatment efficacy and effectiveness. As for the type of questions that other patients should be asking health care providers, four themes arose: 1) Coverage and financial coordination of treatments, 2) Comparison and options of treatments, 3) Treatment/Knowledge about root causes of the disease, and 4) Alternative non-pharmacological treatments.

CONCLUSIONS: Cost, insurance coverage, and side effects are of high importance to patients when considering different treatment options. When patients were asked what they would tell other newly diagnosed patients to ask providers, these themes continued with additional perspectives on determining what factors caused the condition. PED derived through patient experience mapping is a way for HEOR to incorporate critical patient views and questions in models.