Of the 114 eligible patients recruited between February and July 2008, 64 patient interviews were completed (56%). The average patient age was 73 years. Most patients were female (69%), African American (70%), live at home (75%), and have a primary care physician located at the University of Chicago (70%). There were also several who were low income (23% below a median yearly income of $15,000), and did not attend any college (52%). These patients had an average length of stay was 5.3 days, nearly half (48%) having been hospitalized in the past year, and 6 patients (9%) required a proxy to complete the interview. There were no significant differences between responders and non-responders with respect to race, gender, education, income, admission in the past 12 months, residence, PCP location, mental status, length of stay, or discharge status. Responders were more likely to be older than non-responders [73 years (95% CI 69–76 years) vs. 63 years for non-responders (95% CI 57–69 years); (p<0.01)].
Forty-two percent (27) of patients reported experiencing a post-discharge problem. These 27 patients reported forty-two distinct problems, each of which fell into one of five broad categories (). The most common of these were patients having difficulty obtaining follow-up tests or appointments. These patients either had delay in getting, or were unable to get, follow-up appointments, or follow-up tests and test results. There were also many patients who needed re-evaluation and thus, were either readmitted to the hospital or had to return to the Emergency Department. Another major category was those who had problems getting medication or therapy. For example, “one of [the patients] treatment meds…was very hard to find and it delayed us giving her her meds”. Others reported they were not properly prepared for discharge. Most of these patients did not receive proper discharge materials which then caused other issues. As one proxy reported, “The services were supposed to be provided for [the patient] through her social worker, no one has been informed to her being discharged or her being sent home. We have not gotten any services.” Lastly, a few patients reported having hospital complications, such as post-procedural complications, or questions, such as diagnosis questions.
Categories of Patient reported events in care transition experience, with representative quotes
Patients were often uncertain of whether and how communication between the inpatient physician and PCP () took place. One patient said, “I don’t know what the procedure is as far as giving him the message. Does she fax it to him? I don’t know…She told me that she was going to call and inform him on everything that happened. I don’t know anything from there.” The second most commonly expressed perception was from patients who assumed good communication had taken place between his or her physicians. This assumption was grounded in a belief that good communication naturally occurred between physicians. For example one patient expressed: “[doctors] let the other doctors in too. That’s the way take care of stuff.” Lastly, many patients expressed the feeling that their physicians were obligated to communicate with each other. As one patient reported, “I think that they should have let [my PCP] know that I was in the hospital.”
Patient Perceptions of Communication
Two new themes emerged from the inductive analysis (). Forty-five percent of patients reported experiencing negative emotions. These negative emotions were most often expressed as frustration or confusion. For example, one patient expressed confusion by saying, “When I usually have lab work done I have prescription signed…maybe they changed the way of doing it. Now the pharmacy called me. But I’m supposed to have a note or something”. Patients who reported a post-discharge problem were more likely to report negative emotions (67% vs. 26%, p<0.01). Feelings of empowerment were reported by 31% of patients. Empowerment was expressed most often as the patient being proactive in communicating with the PCP. One patient reported, “We informed [my PCP] …and we filled in all of the information that we wanted him to know about”. Empowerment was also expressed as being proactive in advocating for communication between the inpatient team and the PCP (). Some patients expressed feeling empowered through the support of a third party, such as a home nurse. In addition, patients who have a third party advocate are more likely to report being empowered. Empowerment was expressed by 26% of patients with no third party advocate compared with 71% of patients with a third party advocate (p=0.02).
Categories of Patient reported feelings in care transition experience
From our sample of patients who completed a 2-week post-discharge interview, we were able to obtain PCP surveys for 40 (63%) of these patients (). Thirty percent (12) of PCPs reported being unaware of the hospitalization. In all but 4 cases, PCPs had communicated with the medical team during hospitalization. Examining the association between PCP knowledge and patient reported post-discharge problems showed that patients whose PCPs were not aware of the hospitalization were two times more likely to report a post-discharge problem. A post-discharge problem was reported by 67% of patients whose PCP was not aware of the hospitalization, while a post-discharge problem was reported by 32% of patients whose PCP was aware (p<0.05). Six patients reported returning to the ED or being readmitted. Four patients (33%) of PCPs who were unaware of hospitalization reported returning for reevaluation whereas 7% (n=2) of patients whose PCP was aware of hospitalization reported returning for evaluation (p=0.055). Interestingly, patients whose PCPs were not aware of the hospitalization reported feeling more empowered (58%) than those patients whose PCP were aware of the hospitalization (21%, p=0.03). Because of possible confounding (patient report of problems post-discharge problems may be affected by PCP awareness of hospitalization), we examined whether patients whose PCPs were aware of their hospitalization differed from those that did not. Patients whose PCPs were aware of their hospitalization were often older (75 yo vs. 69 years old), white (80% white vs. 65% nonwhite) and female (75% female vs. 54% male). While this small sample size prohibits examining for statistical significance, the magnitude of these differences suggests the need for a larger study to examine patient predictors of PCP awareness of hospitalization.