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Collecting patient-reported outcomes in an inpatient rehabilitation setting is feasible, with dedicated staff

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Patient Reported Outcomes, or PROs, are reports of health status that come directly from the patient without interpretation by a clinician. There is a growing body of evidence that PROs contribute to improvements in quality of care and help highlight symptoms that may be missed or underappreciated by clinicians. They can also be used to evaluate a patients’ strengths and weaknesses and to determine readiness to move to the next phase of rehabilitation, but little is known about the feasibility of collecting PROs in an inpatient rehabilitation hospital.

According to a new paper in the Journal of Patient-Reported Outcomes, it is feasible to collect PROs from this patient population. However, although the time requirements to collect PROs was small in the study, additional staff resources may be required.

“What we really wanted to know is would patients cooperate with the collection of PROs and would the time required to collect PROs be prohibitive in an inpatient rehabilitation setting,” said Allen Heinemann, PhD, Director of the Center for Rehabilitation Outcomes Research at Shirley Ryan AbilityLab and a an author on the paper. “We thought that using brief assessments delivered via tablet would reduce the time and burden on patients and staff.”

PROs are normally collected via survey, which can pose difficulties for patients in inpatient rehabilitation hospitals who may have functional, cognitive or communication challenges. Shortened forms of commonly-used instruments to collect PROs that are targeted to the specific health condition of a patient can be delivered via computerized adaptive testing, or CAT. These ‘mini’ surveys, taken on web-based tablets, can reduce the burden of providing PROs by patients.

Heinemann and colleagues collected information on PROs via shortened, targeted assessments delivered via CAT from inpatients at Shirley Ryan AbilityLab, an internationally-recognized rehabilitation hospital. The assessments were based on a validated set of measures called the Patient Reported Outcomes Measurement Information System (PROMIS) that are used to measure the physical, mental and social health of adults and children in a general population as well as people living with chronic conditions.

“We started off using nurses to deliver the assessments to patients, but soon realized that due to their many other routine clinical responsibilities, they weren’t able to administer the assessments in a timely manner,” said Heinemann, who is also Professor of Physical Medicine and Rehabilitation in the Feinberg School of Medicine at Northwestern University. “So we switched to using research assistants to deliver the assessments and help patients complete them when needed,” Heinemann said.

A total of 98 assessments from 59 inpatients were completed. Out of the 98 completed assessments, 40 patients completed assessments on one occasion, 13 patients completed assessments on two occasions, five patients completed assessments on three occasions, three patients on four occasions, and one patient on five occasions.

Participants had various health conditions including stroke, spinal cord injury, traumatic brain injury, and other neurological disorders. Clinicians used results from repeated assessments and changes (or stability) over time to inform clinical decision-making.

Patients completed 12% of the assessments independently; the staff members read questions to facilitate 3% of the assessments, and read and recorded responses for 85% of assessments. It took on average 12 minutes to complete six assessments.

“Collecting PROs from inpatient rehabilitation patients is feasible, and could help improve outcomes for these patients at the hospital,” said Heinemann. “While we found that many patients did require assistance in completing the assessments, the time needed to do so was relatively short. But for busy nursing staff, the extra time was hard to find and so PROs may be better collected using non-clinical staff.”

This study was funded by the Henry B. Betts Innovation Award from Shirley Ryan AbilityLab.

Riyad Bin Rafiq, a doctoral candidate in the Department of Computer Science and Engineering at the University of North Texas, Denton, is corresponding author on the paper. Susan Yount, PhD, Elliot J. Roth, MD, and David Cella, PhD, of the Feinberg School of Medicine at Northwestern University; Sara Jerousek, CO, LO of Anne & Robert H. Lurie Children’s Hospital and Mark V. Albert, PhD, of the University of North Texas, Denton are co-authors on the paper.