Guide: Popular Pediatric PRO Tools
What’s different about Pediatric PROs?
Collecting patient-reported outcome data in the pediatric population is just as important as it is in adults. There are many fantastic PRO surveys that have been validated for patients under the age of 18. Even though the tools are validated, collecting PROs in this cohort is not as straightforward as in adults. One of the big considerations, to which there is not a black or white answer, is “When it is okay for a proxy to fill out the survey on behalf of the child?”
At CODE, we work with each of our clients to set business rules on when and how to use proxies. We also always capture whether or not pediatric surveys are being filled out by the patient or not, and if not, we ask who helped them and what their relationship is to the child.
Another thing to prepare for when it comes to collecting pediatric PROs is a plan for educating the parents on the process. You need to explain the process to the patient, and the guardian, and we find that we field more questions and spend more time educating than we do with our adult data collection programs.
CODE’s Recommended Pediatric PRO Tools
We put together a guide on the most commonly used pediatric PROs amongst our clients. Included in the guide are:
– Scoliosis Research Society (SRS)-22r
– Child & Adolescent – IKDC Subjective Knee Form
– Pediatric QuickDASH
– PROMIS Pediatric & Parent Proxy Profile
If you have questions about a tool that you do not see in the guide, send us a message and we would be happy to help you find information. We are also happy to chat with you about our experience and lessons learned with collecting PROs on pediatric patients.