Abstract
OBJECTIVES: The objective of this study was to identify if commonalities exist across conditions on the way different conditions and their treatments impact patient health and daily life. METHODS: Qualitative data were collected using in-depth interviews to identify patient experiences with asthma, colorectal cancer, and multiple sclerosis. Patient-organization partners supported recruitment efforts. Virtual, 1-h concept elicitation interviews were conducted with US adults in November to December 2022. Interviews included open-ended questions, using a semi-structured guide adapted from the National Health Council's Map My Experience Toolbox. In addition, in a final interview question, participants rated a list of common impacts derived from review and analysis of existing Voice-of-the-Patient (VoP) reports as "important/not important." Patient data were aggregated to identify cross-cutting impacts meeting a threshold (i.e., 16 of 24 patients reported) or if reported as most bothersome. Resulting impacts were confirmed through review with partner patient organizations. Follow-up interviews were conducted with a subset of participants to identify aspects of the impact that make it important as well as to prioritize and rate the list of impacts. RESULTS: A total of 24 adults were interviewed; n = 8 per condition. Common symptoms (% of patients reporting) across conditions included: emotional health/anxiety/depression (95.8%), fatigue (83.3%), pain/discomfort (54.2%), nausea/vomiting (50.0%), gastrointestinal (GI) symptoms (45.8%), cognitive health (45.8%), and sleep disturbance (41.7%). Common function-related impacts (% of patients reporting) included: physical mobility (83.3%), activities of daily living (79.2%), work life (75.0%), emotional burden of disease (66.7%), and lifestyle changes (62.5%). Condition-specific impacts included symptoms such as cough for asthma, chronic sensory/sensitivity dysfunction symptoms for colorectal cancer, and neuromuscular symptoms for multiple sclerosis. For the final interview question, most patients rated the VoP-generated impact list as "important," which sometimes conflicted with the concept elicitation interview findings. For example, pain/discomfort was reported by 54.2% of patients from the concept elicitation interviews versus 73.9% of patients rating the VoP list. Additional probing and prioritization of cross-cutting impacts were based on follow-up interviews, (n = 12) resulting in a prioritized list of "direct" impacts (n = 8) and "probing" impacts (n = 18). Patients reported intensity and impact on function as the most important aspects or attributes of the symptom-related impacts, and difficulty and missed days/ability to continue working were reported as the most important aspects for the function-related impacts. CONCLUSIONS: Across three medical conditions, a preliminary set of cross-cutting "most important" impacts was identified, which could be used to help inform standardization of patient experience data (PED) collection. As expected, condition-specific impacts emerged that did not align across conditions; they should be considered in the collection of patient experience data, as they are important to patients with that condition and reflect that there are disease-specific nuances beyond the cross-cutting set.