Results Summary

What was the research about?

Patients who have health problems that affect the central nervous system, such as stroke, Parkinson’s disease, or brain injury, often go to an inpatient rehabilitation facility, or IRF, to help them recover. IRFs measure the quality of care they provide in many ways. One way is to use data from patient-reported surveys. These surveys tell us about the care from the patient’s point of view.

The research team wanted to learn if it was possible to collect patient-reported data from patients with health problems that affect the central nervous system. Doctors may assume that these patients have trouble reading and answering survey questions. To find out, the research team developed and tested a 55-question survey.

What were the results?

The results of this study suggest that it’s possible to collect patient-reported data from patients who have health problems that affect the central nervous system.

  • Completing the first survey. Most patients completed the survey in about 15 minutes. Also, 73 percent of patients completed the first survey without help. After the survey, most patients who did an interview said they would be willing to complete this survey as a regular part of their stay at the IRF.
  • Completing the follow-up survey. One month after they left the IRF, 71 percent of patients completed the second survey. Before completing that survey, 58 percent of patients needed one or more reminder calls. Patients who had trouble doing daily activities were less likely to complete the second survey than patients who didn’t have such trouble. Compared with patients who went to another place for care, such as a nursing home, patients who went home were more likely to complete the second survey.

Who was in the study?

In total, 402 patients who had health problems that affect the central nervous system completed the first survey. The patients had health problems such as stroke, Parkinson’s disease, or brain injury. Two facilities in the Chicago area provided care to patients. Patients were 18 to 91 years old, with an average age of 58. In this study, 55 percent of patients were male, 74 percent were white, 18 percent were African American, and 8 percent were other races.

What did the research team do?

The research team held focus groups with 30 patients, 12 caregivers, and 50 doctors, therapists, and nurses. These focus groups helped to identify topics to include in the survey. To ask patients about those topics, the team used questions from other surveys.

Patients took the surveys using a tablet computer or pen and paper up to seven days before leaving the IRF. Patients could ask the research team for help taking the survey. A month after leaving, patients completed the survey again. The team called patients who hadn’t responded to remind them to do the second survey.

The team also used patients’ medical records to get information on their ability to do daily activities.

An advisory group of patients, clinicians, and others guided the research team.

What were the limits of the study?

The study included patients from two IRFs in one urban area. Results may be different for patients in other locations or with other health problems.

Future research could test how well the survey works in different locations or with patients with other health problems. Researchers could also study ways to make it easier for patients to take the survey.

How can people use the results?

IRFs could consider using surveys to help understand the views of patients who have central nervous system problems on the quality of their care.

Final Research Report

View this project's final research report.

Peer-Review Summary

Peer review of PCORI-funded research helps make sure the report presents complete, balanced, and useful information about the research. It also confirms that the research has followed PCORI’s Methodology Standards. During peer review, experts who were not members of the research team read a draft report of the research. These experts may include a scientist focused on the research topic, a specialist in research methods, a patient or caregiver, and a healthcare professional. Reviewers do not have conflicts of interest with the study.

The peer reviewers point out where the draft report may need revision. For example, they may suggest ways to improve how the research team analyzed its results or reported its conclusions. Learn more about PCORI’s peer-review process here.

In response to peer review, the PI made changes including

  • Expanding the tables in the report to address reviewer comments that unfamiliar outcome measures were inadequately described, making it difficult to understand correlations between variables
  • Adding statements to clarify that all comparisons involving performance measures at inpatient and postdischarge stages are exploratory. Reviewers recommended stressing that the results were exploratory because the hypotheses were not prespecified; therefore, the results should be interpreted with caution and as subject to confirmatory studies.
  • Providing more caveats in the Discussion about the interpretation of the study results, given the potential bias in the sample that completed the study. The authors noted that, compared with patients who did not complete the study, the patients who provided follow-up reports on performance measures were, in general, higher functioning and better educated.

Conflict of Interest Disclosures

Project Information

Allen Heinemann, PhD
Shirley Ryan AbilityLab
$1,127,864
Developing Quality Metrics from Patient-Reported Outcomes for Medical Rehabilitation

Key Dates

May 2013
December 2017
2013
2018

Study Registration Information

^Rehabilitation Institute of Chicago was the original organization associated with this project.

Tags

Has Results
Award Type
Health Conditions Health Conditions These are the broad terms we use to categorize our funded research studies; specific diseases or conditions are included within the appropriate larger category. Note: not all of our funded projects focus on a single disease or condition; some touch on multiple diseases or conditions, research methods, or broader health system interventions. Such projects won’t be listed by a primary disease/condition and so won’t appear if you use this filter tool to find them. View Glossary
Populations Populations PCORI is interested in research that seeks to better understand how different clinical and health system options work for different people. These populations are frequently studied in our portfolio or identified as being of interest by our stakeholders. View Glossary
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: April 15, 2024