We Want to Know: Eliciting Hospitalized Patients’ Perspectives on Breakdowns in Care
BACKGROUND: There is increasing recognition that patients have critical insights into care experiences, including 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 postdischarge 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 (eg, pain), emotional (eg, 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 (<60 years old) patients (45.4% vs 34.5%, P < 0.001), those with at least some college education (46.8% vs 32.7%, P < 0.001), 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 = 0.002).
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. Journal of Hospital Medicine 2017;12:603-609. © 2017 Society of Hospital Medicine
© 2017 Society of Hospital Medicine
Interviewers
Five interviewers conducted interviews. One author (KS) provided interviewer training that included didactic instruction, observation, feedback, and modeling. Interviewers participated in weekly debriefing sessions. One interviewer speaks Spanish fluently and was able to conduct interviews in Spanish. Translator services were available for the other interviewers.
Interview Process
Interviews were conducted in person while the patients were hospitalized or via telephone 7 - 30 days postdischarge. A patient who had completed an interview while hospitalized was not eligible for a postdischarge telephone interview. Family members or friends present at the time of the interviews could also participate in addition to or in lieu of the patients with the patients’ assent. Interviewers obtained verbal, informed consent at the start of each interview.
The interview domains and sample questions were developed specifically for the current study and are listed in Table 1. The goal of the interview was to elicit the patient’s (or family member’s) perception of their care experiences and their perceptions of the consequences of any problems with their care. The interviewer sought to obtain sufficient detail to understand the patient’s concerns and to determine what, if any, action might be needed to remediate problems reported by patients. Interviewers captured patient responses by taking detailed notes on a case report form or by directly entering patient responses using a computer or iPad at the time of interview at the discretion of the interviewer.
We defined a patient-perceived breakdown as something that went wrong during the hospitalization according to the patient. If a patient-perceived breakdown in care was identified, the interviewer attempted to resolve the concern. Some breakdowns had occurred in the past, making further resolution impossible (eg, a long wait in the emergency department). Other breakdowns were active and addressable, such as the patient having clinical questions that had not been answered. In such cases, the interviewer attempted to address the patient’s concerns, typically by working with unit nursing staff. For patients interviewed postdischarge, the interviewer worked to resolve ongoing patient concerns with the assistance of the patient safety, quality, and compliance teams as needed. The interviewer provided a brief narrative summary of all interviews to unit nursing leadership within 24 hours. Positive comments were sent to leadership but not captured systematically for research purposes. Further details of the process of responding to patients’ concerns will be reported elsewhere. All data were entered into REDCap to facilitate data management and reporting.15
The MedStar Health Research Institute Institutional Review Board reviewed and approved this study.
Categorizing Patients’ Responses: The Patient Experience Coding Tool
Using directed content analysis,16 we deductively created the Patient Experience Coding Tool (PECT) in order to summarize the narrative information captured during the interviews and categorize patient-perceived breakdowns in care. First, we referred to our prior interviews of patients’ views on breakdowns in cancer care6 and surrogate decision-makers’ views on breakdowns in intensive care units13 to create the initial categories. We then applied the resultant framework to the interviews in the present study and refined the categories. This involved applying the categorization to an initial set of interviews to check the sufficiency of the coding categories. We clarified the scope of each category (ie, what types of events fit under each category) and created additional categories (eg, medication-related problems) to capture patient experiences that were not included in the initial framework.
We then coded each interview using the PECT. A minimum of 2 readers reviewed the narrative notes for each interview. The first reader provided an initial categorization; the second reader reviewed the narrative and confirmed or questioned the initial categorization to improve coding accuracy. If a reader was uncertain about the correct categorization, it was discussed by three readers until an agreement was achieved. Because facilities-related problems (eg, food or parking) fall outside the realm of provider-based hospital care, such comments were not the focus of the outreach efforts and were not consistently recorded. Therefore, they were not included in the PECT and are not reported here.
Analyses
We computed simple, descriptive statistics including the number and percentage of patients identifying at least one breakdown, as well as the number and percent reporting each type of breakdown. We also computed the number and percentage of patients reporting any harm and each type of harm. We computed the percentage of patients reporting at least 1 breakdown by hospital, type of interview (postdischarge vs inpatient), selected patient demographic characteristics (eg, gender, age, education, race), and interviewee (patient vs someone other than the patient interviewed or present during the interview) using the chi-square statistic to test the statistical significance of the resulting differences. All statistical analyses were performed using SPSS version 22.
