Determine the Appropriate PRO Measure
Your reasons for implementing a PRO program will direct your team to a certain instrument(s) that will allow you to meet your objectives. For example, if your institution has decided to collect PROMs for research initiatives, you may choose an instrument that measures multiple domains, like the HOOS and KOOS. These instruments are joint-specific instruments that have five subscales measuring function, pain, hip/knee symptoms, sports and recreation (high level activities of daily living) and quality of life, which would provide a depth of data to address many research hypotheses. However, if you are focused on measuring patients’ outcomes as part of your clinical care, a shorter instrument focused on physical function or critical symptoms (e.g., pain) will suffice as long as it is able to detect change. Other factors to review when assessing PRO instruments are the levels of validity, reliability, and responsiveness of the PROM. Each PROM that is available through AJRR’s platform has been validated, however it will be up to your institution to determine which instrument(s) meets the standards or needs for your PRO program. You will also need to consider the cost to use a specific PROM. Your hospital and/or practice group will be responsible for any PROM licensing cost if you do not use AJRR’s PRO platform to collect a PROM that requires a license. However, only three forms (SF-12, EQ-5D, and WOMAC) require licenses.
For psychometric and validation data pertaining to each of these measures, please visit the following sites:
Health-related quality of life measures
A major factor to address in determining which PROM to utilize is patient and clinician burden. Although longer instruments may provide a more comprehensive or sensitive measure, compliance may be low due to the time it takes a patient to complete the survey (or for a clinician to administer the survey) and may be difficult to analyze if all items are not answered. AJRR, in conjunction with the AAHKS Patient-Reported Outcome Summit, has identified patient burden to complete long instruments as a major barrier in data collection on a national level. AJRR’s recommended PROMs are short instruments (12 items or less) that have been validated to detect measurable change over time. Longer instruments may require clinicians or clinic staff taking a more active role in monitoring and checking completion of the forms. With electronic capture, short forms should increase compliance rates and reduce missing data points.
Comparability across populations is another factor to discuss. Instruments that are commonly used and have been developed for across population comparison are useful when comparing diverse communities. AJRR’s HRQL measures have been validated for this process. Also, a cross walk has been developed for the VR-12 and PROMIS-10 Global Health to facilitate linkage between these instruments.12 In regards to joint-specific measures, outcome measurement groups are in the process of facilitating linkage between these types of instruments as well as among other commonly utilized PROMs.
When considering a PROM, you should take into account your patient population. Age, education, socioeconomic status, and patient literacy (reading, health, and computer) can all be potential barriers for patients to participate with the data collection protocol. Language is another consideration – do you need a measure that has been validated and translated into other languages? At this time, AJRR platform only provides English versions of the accepted PROMs. If AJRR participants begin to request non-English versions, AJRR will review and assess whether each PROM has a valid non-English version appropriate for use and analysis.
Finally, although total joint PRO surveys may not be considered controversial in content (i.e., they do not ask personal, sensitive questions), they may make a patient feel insecure about their functional capabilities or patients may not be sure how to answer a question if they do not perform a specific activity described in the survey (e.g., they do not engage in vigorous activities). Evaluating these types of factors will be essential when discussing the type and method to collect PROMs and how you will frame this additional assessment to your patients, especially if your organization plans to share results with patients. For example, including explicit language indicating the purpose of the survey such as: a) we are asking you to complete this survey because we want to know more about how you are doing, b) indicate what the health care team plans on doing with this information (e.g., share only with care team), c) there are no right or wrong answers – some things may be more or less important or relevant to you. Please try to answer all questions.
There are many factors to consider when choosing a PROM to meet your PRO objectives. Again, this link provides additional resources from leading outcome experts that offer more in-depth discussion on the above topics. However, as in each section, below are basic questions to start the discussion.
What does the measure assess – quality of life or function?
-Do we want to understand both or just one aspect?
What is the associated patient burden?
-What is the length of form? How easy/hard is the form to complete?
What is the associated staff burden (full-time employee time)? Who will be assisting patients with forms? Whose job is it to follow up with patients?
What is the cost (licensing fee) to use the form?
Do we have non-English speakers in our patient population? Will we need translated versions of our preferred PROM(s)?