Generating hypotheses about care needs of high utilizers: lessons from patient interviews

Abstract

Informed by a largely secondary and quantitative literature, efforts to improve care and outcomes for complex patients with high levels of emergency and hospital-based health care utilization have offered mixed results. This qualitative study identifies psychosocial factors and life experiences described by these patients that may be important to their care needs. Semi-structured interviews were conducted with 19 patients of the Camden Coalition of Healthcare Providers' Care Management Team. Investigators coded transcripts using a priori and inductively-derived codes, then identified 3 key themes: (1) Early-life instability and traumas, including parental loss, unstable or violent relationships, and transiency, informed many participants' health and health care experiences; (2) Many "high utilizers" described a history of difficult interactions with health care providers during adulthood; (3) Over half of the participants described the importance to their well-being of positive and "caring" relationships with primary health care providers and the outreach team. Additionally, the transient and vulnerable nature of this complex population posed challenges to follow-up, both for research and care delivery. These themes illuminate potentially important hypotheses to be explored in more generalizable samples using robust and longitudinal methods. Future work should explore the prevalence and impact of adverse childhood experiences among "high utilizers," and the different types of relationships they have with providers. Investigators should test new modes of care delivery that attend to patients' trauma histories. This qualitative study was well suited to provide insight into the life stories of these complex, vulnerable patients, informing research questions for further investigation.