Beyond satisfaction scores: exploring emotionally adverse patient experiences

Although improving the average patient experience is at the center of recent efforts to make cancer care more patient centered, extreme experiences may be more informative for quality improvement. Little is known about the most deeply dissatisfying experiences that predispose disengagement and negatively influence patient outcomes. We sought to establish a framework for emotionally adverse patient experiences and identify the range of common causes.

Qualitative study including in-depth interviews and free-text survey comments.

Thematic analysis of 20 open-ended patient interviews and 2389 free-text survey comments collected in a medical center's cancer clinics.

Emotionally adverse experiences were rarely reported in survey comments (96; 4.0%) but more frequently discussed in interviews (12 interview participants). Such experiences were identified through explicit statements of negative emotion, language, syntax, and tone. Among these rare comments, hostility as an indicator was easiest to identify, whereas passive expressions of fear or hopelessness were less reliably identified. We identified 3 mutually inclusive high-level domains of triggers of negative emotion-system issues, technical processes, and interpersonal processes-and 10 themes within those domains. There was wide variation in the causes of emotionally adverse experiences and evidence of a complex interplay of patient expectations and preconditions that influenced the perception of negative experiences.

This study presents a taxonomy for classifying emotionally adverse patient experiences expressed in free-text format. Further research should test how perceptions of adverse experiences correspond to recorded ratings of patient satisfaction and subsequent enrollment or utilization.