BACKGROUND: There is increasing recognition that patients have critical insights into care experiences, including about breakdowns in care. Harnessing patient perspectives for hospital improvement requires an in-depth understanding of the types of breakdowns patients identify and the impact of these events.
METHODS: We interviewed a broad sample of patients during hospitalization and post discharge to elicit patient perspectives on breakdowns in care. Through an iterative process, we developed a categorization of patient-perceived breakdowns called the Patient Experience Coding Tool.
RESULTS: Of 979 interviewees, 386 (39.4%) believed they had experienced at least one breakdown in care. The most common reported breakdowns involved information exchange (n = 158; 16.1%), medications (n = 120; 12.3%), delays in admission (n = 90; 9.2%), team communication (n = 65; 6.6%), providers’ manner (n = 62; 6.3%), and discharge (n = 56; 5.7%). Of the 386 interviewees who reported a breakdown, 140 (36.3%) perceived associated harm. Patient-perceived harms included physical (e.g., pain), emotional (e.g., distress, worry), damage to relationship with providers, need for additional care or prolonged hospital stay, and life disruption. We found higher rates of reporting breakdowns among younger (less than 60 years old) patients (45.4% vs. 34.5%; P less than .001), those with at least some college education (46.8% vs 32.7%; P less than .001), and those with another person (family or friend) present during the interview or interviewed in lieu of the patient (53.4% vs 37.8%; P = .002).
CONCLUSIONS: When asked directly, almost 4 out of 10 hospitalized patients reported a breakdown in their care. Patient-perceived breakdowns in care are frequently associated with perceived harm, illustrating the importance of detecting and addressing these events.
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