Patient-Reported Outcome surveys (PROs) allow patients to have a voice in their recovery by providing them with a platform to voice feedback on their recovery. To make use of that feedback in a measurable way that can be utilized by providers to improve practice, PRO tools must be put together carefully in order to account for the large variety of individuals that might take the survey.
Every patient has different levels of education, disabilities, and diseases that require consideration when selecting what PRO tool to use. Furthermore, these tools must be utilized in a way that can be measured and compared. So, when building an outcome program, there are a number of common terms used by researchers when discussing these tools.
Domain: A sub-concept represented by a score of an instrument that measures a larger concept comprised of multiple domains.
Item: An individual question, statement, or task (and its standardized response options) evaluated by the patient to address a particular concept.
Reliability: In reference to test-retest reliability, this is when an instrument is tested on two different occasions with no real change occurring in the subject, the outcome measurement will be very near, and preferably identical. A reliability coefficient of 1.0 represents perfect reliability. A score of .75+ considered good. .75-.50 are considered moderate, and below .50 is considered poor. This is because if there was a reliability score of .35, the outcome measurement would have to take into account that only 35% of the variance is true score, and 65% would be due to measurement error.
Validity: Degree to which an instrument measures what it is supposed to measure. In contrast to reliability, the measurement does not always have to be similar. When an instrument is both valid and reliable, the tool is most accurately capturing the information researchers are looking to collect.
Responsiveness: Ability of an instrument to accurately detect change as it has occurred. To measure responsiveness, an instrument must be reliable, and include items that are likely to change. The instrument must allow for these changes to be score for improvement, or lack thereof.
Positive Predictive Value (PPV): Probability that patients with a positive self-reporting screening truly have the disease.
Negative Predictive Value (NPV): Probability that patients with a negative self-reporting screening truly don’t have the disease.
General Health Tools: Instruments that measure patient health status across several factors usually including areas such as physical, mental, and social well-being. This tool can be used across all patient populations to provide more information about factors that could possibly have an affect on the specific disease a patient is being treated for. Examples of these tools would include SF-36, PROMIS Global-10, EQ-5D.
Disease Specific Tools: Instruments developed to measure patient’s perceptions of a specific disease or problem. These tools should be responsive to clinically important changes in health that result from interventions. For example, tools like the Hip Disability and Osteoarthritis Outcome Score (HOOS) score can provide feedback on patient symptoms and functional limitations. By testing pre-operatively, and then following-up post-operatively, the scores can be compared/contrasted to evaluate the effect that a surgical or therapeutic intervention has had on the patient.
These are a few of the basic terms you will come across when reviewing and selecting outcome tools. Please let us know if there are more you would like defined.
CODE PRO Terms
Once you get started collecting outcomes with CODE, you’ll be provided many dashboards and reports for monitoring success at all levels of the assessment cycle. Here are some helpful explanations of various terms used throughout the system.
Enrolled: A patient has been enrolled once their surgery information has been sent to CODE and they have been entered into the CODE PRO System. Once enrolled, they will then begin to receive notifications to complete assessments at various intervals based on the type of procedure they are scheduled for, and the date the surgery occurs.
Eligible: A qualified patient whose complete surgical information is sent to CODE within the required time frame becomes eligible for the pre-op assessment. A patient who completed a pre-op assessment is then eligible for the post-op assessments.
Procedure Verification: After a patient’s surgery date has passed, one very important property tracked is procedure verification. This is the indicator that the patient did have surgery on the date recorded in the CODE system. By regularly performing this check, we are able to avoid the potential damage of contacting a patient who may not have actually had surgery. Since cases are often canceled or rescheduled at the last minute, this process ensures that they won’t be contacted for a 3-month post–op PRO Assessment for a surgery they didn’t have.
When a patient is enrolled in the CODE PRO system, we are able to monitor many ratios on a per-surgeon, per-procedure basis (as well as bigger-picture, overall totals). Below are key terms you’ll hear us use often:
Capture Rate: The percentage of eligible patients who have completed a particular PRO assessment. Monitoring it at every administration interval is very important. The reports contain the overall data capture rate, as well as the capture rate for each post-op data collection interval. You can find tips on maintaining high patient-reported outcomes capture rates here.
Missed: The percentage of eligible patients who did not complete their interval assessment by the due date for an unspecified reason.
Declined: The measure of eligible patients that had been asked to complete a patient outcome assessment, but explicitly refused to do so. This is a rare occurrence and represents only 2% of all the patients in CODE’s database.
Excused: The term given to assessments that were missed for a reason beyond the control of the outcome team, such as late procedure information received (less than 7 days), missing or incorrect contact info, language issues, etc.
By understanding and using the CODE PRO system correctly, you will be able to grow your private data registry at the fastest possible rate and maximize the value of the program.