Beyond satisfaction scores: exploring emotionally adverse patient experiences.

OBJECTIVES: 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. STUDY DESIGN: Qualitative study including in-depth interviews and free-text survey comments. METHODS: Thematic analysis of 20 open-ended patient interviews and 2389 free-text survey comments collected in a medical center's cancer clinics. RESULTS: 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. CONCLUSIONS: 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.

Development of common data elements: the experience of and recommendations from the early detection research network.

There have been an increasing number of large research consortia in recent years funded by the National Cancer Institute (NCI) to facilitate multi-disciplinary, multi-institutional cancer research. Some of these consortia have central data collection plans similar to a multi-center clinical trial whereas others plan to store data locally and pool or share the data at a later date. Regardless of the goal of the consortium, there is a need to standardize the way certain data are collected and stored, transferred, or reported across the institutions involved. This communication is a report of the process and current status of the development of common data elements (CDEs) by the Early Detection Research Network (EDRN). The development of the CDEs involved several stages with each stage requiring input from multi-disciplinary experts in oncology, epidemiology, biostatistics, pathology, informatics, and study coordination. An effort was made to be consistent with other consortia developing similar CDEs and to follow data standards when available. Initial focus was on identifying the minimum data that would be necessary to collect on all EDRN study participants and EDRN specimens. There are currently CDEs in the development or pilot phase for eight different organ sites and 13 different types of specimen procurements and plans to develop CDEs for 12 or more additional types of specimens.