PCORI funded the Pilot Projects to explore how to conduct and use patient-centered outcomes research in ways that can better serve patients and the healthcare community. Learn more.

Background

Patients with illnesses that last a long time often have a hard time taking care of themselves after they go home from the hospital. Some end up returning to the hospital to get help soon after they go home.

Having to go back to the hospital can be hard on patients and their caregivers, but there is little information about how to prevent it from happening. There are no good ways to know which patients are more likely to have problems and need to go back to the hospital.

Project Purpose

The research team wanted to find out which challenges patients with long-term health problems were having that made them decide to go back to the hospital soon after they left. By better understanding these challenges, doctors might be able to help patients manage their illness better at home.

The researchers focused on patients with heart failure, their caregivers, and their doctors. In people who have heart failure, the heart doesn’t pump blood as well as it should, leading to tiredness and shortness of breath.

Methods

The researchers studied patients with heart failure from two hospitals in the same health system. They interviewed the patients and their caregivers individually and in groups. The research team also sent a survey to patients and caregivers. The researchers also interviewed the patients’ doctors.

Researchers looked at whether patients went back to the hospital within 30 days of leaving. They also looked at health information from patient medical records and what participants said was important to patients.

The study had four parts.

Part 1: The researchers first wanted to get as many ideas as possible about why patients might return to the hospital. They interviewed

• 57 patients who went to the hospital for heart failure
• 27 caregivers
• 67 doctors

Part 2: The researchers interviewed

• 16 heart failure patients who had to go back to the hospital within 30 days of leaving
• 15 heart failure patients who left the hospital and were still at home 30 days later

They asked more detailed questions about why they had returned to the hospital or had been able to stay at home.

Part 3: The researchers created a survey with 30 questions based on what they learned from the interviews. The researchers gave the survey to 202 patients who were in the hospital for heart failure. After these patients left the hospital, researchers tracked them for 30 days to see which people needed to go back for more care. The researchers looked at the survey answers to find out which types of challenges made it more likely that patients would go back to the hospital.

Part 4: The researchers talked with 19 patients and 11 caregivers in groups. During these group discussions, the researchers shared what they learned during the other phases of research and asked if patients and caregivers agreed with their findings.

Findings

Parts 1 and 2: Interviews with patients, caregivers, and doctors. Researchers identified a number of reasons that make living with heart failure difficult:

• Patients talked about problems managing symptoms at home.
• Caregivers talked about difficulties in managing daily tasks.
• Doctors talked about patients’ problems with taking their medications as prescribed.

Part 3: Survey of patients and caregivers. Patients had different types of problems at home. The researchers didn’t find anything that would tell them whether a patient was likely to go back to the hospital.

Part 4: Group discussions with patients and caregivers. People in the group discussions agreed with what patients and caregivers had said during interviews and in survey responses. People in the group discussions also thought that in order to keep patients from going back to the hospital, help should be available for patients who

• Feel alone and isolated at home
• Worry about their symptoms

Finally, researchers learned that patients do not like going back to the hospital, but they think it’s the right choice if they are feeling very sick.

Limitations

All of the people in this study came from two hospitals. Results might be different if the researchers studied people at many different hospitals.

Conclusions

There are many reasons why patients go back to the hospital. This study didn’t find links between the types of problems that patients had and whether they decided to go back to the hospital within 30 days of leaving. Because patients have different types of problems, a one-size-fits-all approach to helping patients manage their illnesses at home might not help people avoid return trips to the hospital. Patients might need solutions that match their individual needs.

Sharing the Results

The researchers presented their results at scientific meetings and have written articles for journals.

PCORI funded the Pilot Projects to explore how to conduct and use patient-centered outcomes research in ways that can better serve patients and the healthcare community. Learn more.

Project Purpose

Patients admitted to the hospital for a chronic disease such as heart failure (HF) often experience difficulty managing their illness upon discharge and may require readmission within a short period of time. Readmission places a burden on the patient and the patient’s caregivers, yet little information is available about the factors that contribute to these hospital readmissions, and existing predictive models do not accurately identify who may be at risk for readmission.

The primary aim of this study was to capture patient-centered reasons for hospital readmission by collaborating with stakeholders, including patients with HF, their caregivers, and their clinicians, to identify factors that precipitate readmission, reduce readmission and improve transition of care.

Study Design

The study used a combination of qualitative and quantitative techniques across four separate phases of data collection, which included free-listing interviews, semi-structured interviews, questionnaire development and administration, and focus groups.

Participants, Interventions, Settings, and Outcomes

Participants included adult patients who were recently admitted to the hospital (two different hospitals that serve both the local community and a tertiary care population) for HF, their clinicians, and their caregivers.

The primary outcome measure was a binary indicator of readmission for any cause within 30 days of discharge. Secondary outcomes included clinical data extracted from medical records that were used in prior HF readmission models, along with patient-centered factors identified by the participants.

Data Analysis

In Phase 1, free-listing interviews were conducted with 57 patients admitted to the hospital with HF, along with 27 caregivers and 67 clinicians responsible for their care. In Phase 2, semi-structured interviews were conducted with 16 patients who were readmitted to the hospital within 30 days of discharge for a prior hospitalization for HF and with 15 patients who were discharged from the hospital and remained at home for 30 days without experiencing readmission to a hospital setting. Information reported through these interviews was used to develop a 30-item questionnaire that was administered to 202 patients admitted to the hospital for HF in Phase 3 of the study. These patients were followed for 30 days post-discharge to identify the patients who required readmission to the hospital. Finally in Phase 4, 19 patients and 11 caregivers participated in focus group discussions to validate the patient-centered factors extracted through prior phases.

Qualitative data were analyzed using a variety of software packages, including Antropac and NVivo 9.0. Interrater reliability of the final coding system was established by triple coding by three investigators of the first three transcripts and double coding of every fifth interview. Quantitative data were analyzed using descriptive and multivariate statistics, including logistic regression, to determine the patient-centered factors and improvements of a predictive model of readmission risk through the addition of these factors.

Findings

Free-listing and semi-structured interviews with patients, caregivers, and clinicians revealed that each stakeholder type identified different barriers to managing HF as a chronic disease. For example, patients often described the difficulty of managing symptoms, while their caregivers mentioned the need to perform household chores. Clinicians more frequently referred to medication adherence. Analysis of the survey results suggest that predictive models designed to identify patients at risk for hospital readmission perform poorly (C-statistic=0.66). The data further expand insight on those models by demonstrating that patient-centered factors do not further improve prediction of readmission (C-statistic=0.61). However, patients face unique challenges in the transition from an acute care setting to home management of HF, and, therefore, a “one-size-fits-all” approach to managing patients during this transition will likely not prevent readmission. The information obtained through the focus group discussions validated the results of the stakeholder interviews and identified isolation and the fear generated by disease symptoms as two key components to understand and address in developing intervention strategies for patients and their caregivers to reduce the likelihood of readmission. The data also showed that patients do not view readmission as a desired outcome but believe it is a rational choice when their symptoms become acute.

Limitations

This study population was limited to a single health system, which may limit applicability to other health systems.

Conclusions

Hospital readmission within 30 days of discharge for HF management places burdens on all stakeholders, but the perception of that burden is different for clinicians than for the patients and caregivers living with HF. Findings suggest that there are no distinct characteristics that can predict readmission and that the addition of patient-reported factors does not improve prediction of readmission. Therefore, managing 30-day hospital readmission rates may not be an ideal patient-centered outcome variable. Patients see readmission as a rational choice. Interventions designed to successfully transition the HF patient from hospital to home should incorporate strategies to address both the acute and chronic challenges of managing HF.