What Is Important to Patients? A Mixed Methods Study to Understand Patient Experience Commonalities Across Three Conditions.

objectivesThe 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.

methodsQualitative 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.

resultsA 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.

conclusionsAcross 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.