Relational empathy and holistic care in persons with spinal cord injuries

Objective: Describe perceptions of persons with SCI on their receipt of holistic care and relational empathy during health care encounters. Design: Mailed survey. Participants/Setting: Individuals with SCI who received care from the largest suppliers of SCI care and rehabilitation (Veterans Health Administration and SCI Model Systems). Outcome Measures: Using a survey and administrative databases, we collected demographic and injury characteristics, health status, health conditions, and the main outcome: Consultation and Relational Empathy (CARE) measure. Results: The sample included 450 individuals with SCI (124 Veterans and 326 civilians). Response rate was 39% (450/1160). Analyses were conducted on patients with complete data (n = 389). Veterans and civilians with SCI differed across many demographic characteristics, age at injury, and etiology, but mean CARE scores were equivalent. Fewer than half of the full SCI cohort had CARE scores above the normative value of 43. Having a recent pressure ulcer showed a trend for lower odds of having a normative or higher CARE score. Odds of having an above-normative CARE score were nearly 2 times greater for individuals with tetraplegia, and odds were higher for those with higher physical and mental health status. Conclusions: Higher physical and mental health status and tetraplegia were each independently associated with greater perceptions of holistic care and empathy in the therapeutic patient-provider relationship. Limited empathy, communication, and holistic care may arise when providers focus on disease/disease management, rather than on patients as individuals. Frequent health care use and secondary conditions may affect empathy and holistic care in encounters, making it essential to understand and employ efforts to improve the therapeutic relationship between patients with SCI and their providers.