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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.

Objective

To evaluate the feasibility of administering patient-reported outcome measures (PROMs) of inpatient rehabilitation facility (IRF) quality to patients with neurological conditions

Study Design

This study looked at the feasibility of collecting IRF PROM data for use in quality improvement. Throughout the study, an advisory committee made up of patients, clinicians, and other stakeholders provided input to the study team.

Researchers in this study conducted focus groups with 50 clinicians, 30 patients, and 12 caregivers who had experience with neurological conditions. The focus groups identified 20 concepts about quality of care related to the National Quality Forum’s framework of six core domains for person- and family-centered care. The team then selected or adapted 55 items from existing assessments of these quality concepts, and they administered the resulting survey.

Two IRFs in metropolitan Chicago provided care to patients in the study: a freestanding hospital downtown and a suburban IRF unit. Patients in the study had a variety of neurological conditions including stroke, Parkinson’s disease, or brain injury. Patients were 18 to 91 years old, with an average age of 58. In this study, 55% of patients were male, 74% were white, 18% were African American, and 8% were other races.

A total of 402 patients completed the initial survey using either a tablet computer or pen and paper up to seven days before discharge. One month after discharge, patients completed the follow-up survey through an online link or by mail.

While patients were in an IRF, the research team administered the Cognitive Capacity Screening Exam (CCSE), a motor-free, 30-item mental status questionnaire. The team also extracted Functional Independence Measure (FIM™) scores, a measure of motor functioning, from patients’ medical records.

Results

Initial survey completion. Median time to complete the survey was 15 minutes. Patients used tablets more often (85%) than paper (15%) to complete the survey. In a debrief interview after the first survey, when asked about their willingness to complete the survey as a routine part of their IRF stay, 65% of patients were “very willing” and 30% were “willing.”

Assistance required. Among patients who completed the initial survey, 73% did so without assistance. Patients with CCSE scores at or below 20 points, which indicated cognitive limitations, were more likely to require assistance than those who scored above 20 points (p<0.05).

Follow-up completion. A total of 285 patients (71%) completed the follow-up survey. Forty-two percent of patients required no telephone reminder calls, 23% needed one to two calls, and 35% required three to five calls. Patients with lower motor function scores were less likely to complete the follow-up survey than those with higher motor function scores (p<0.001). Patients who were discharged home were more likely to complete the survey than those who were discharged elsewhere (p<0.01).

Limitations

The study included patients from two IRFs in a single metropolitan area. Results may be different in other areas. Patients’ IRF schedules changed unexpectedly due to therapy and complications, which led to differences in timing of survey administration that may have caused differences in survey responses.

Conclusions and Relevance

Collecting information on experience of care and health status from patients with neurological conditions during and following an IRF stay is possible. However, some patients may need assistance completing assessments while in the facility and multiple reminders to complete follow-ups.

Future Research Needs

Future research could evaluate survey data with a larger sample of IRF patients, with patients who have other impairments, or in different locations. Researchers could also look into strategies to maximize response rates during and after an IRF stay.