Overview of Survey
Did you receive an email asking you to fill out a health questionnaire before your appointment, or did our staff give you a tablet in clinic? If so, you may have some questions about this new process.
The health questionnaire is a “patient-reported outcome” survey, or PRO. It has questions that only you (the patient) can answer. The OHSU Transgender Health Program has named our collection of patient-reported outcomes “TRANS (Transgender and Non-Binary Surgery) PRO.”
We are in the process of rolling out TRANS PRO to our urology gender-affirming surgery clinics over the next year, so you can expect to see the questionnaires at your clinics.
How are these questions used?
Your health care
Patient-reported outcomes are very important tools to understand how well a patient is doing, in addition to appointments in our clinics. Traditionally, health care providers have used measurements such as infection rates and complications. However, these measures don’t really help define the value a patient receives from surgery from the patient’s perspective. The questions in our TRANS PRO questionnaires are meant to collect and help track information that you, as the patient, find important to your surgery.
In the OHSU Transgender Health Program, we view this as an opportunity to further understand our patients, add value to your care, and improve and enhance our preparation and surgical processes to improve results for patients.
TRANS PRO asks you to answer health-related questions electronically instead of asking you to fill them out on paper. By collecting your answers electronically, we can transmit them directly into your chart, where your provider can view your responses. These questionnaires are meant to enhance —not replace— conversations between you and your provider.
A few separate research surveys are not part of your clinical care that your provider won’t see in your medical record, which we’ll let you know about below.
How is this helpful to my provider and me?
The primary goal of the patient-reported outcome questionnaires is to understand how you feel about your health. At its simplest, they:
Give you a voice and insight into your overall health status.
Allow you to chart your progress towards achieving specific health goals.
Increase communication between you and your provider.
This is an opportunity for you to provide more specific details about your health to your provider. The questionnaires also help ensure that your concerns are addressed. This is a useful tool because it gives your provider more information about your overall health.
This additional information can assist your provider in evaluating your progress over time and creating the best plan of care for you, with you.
Research (outside of your healthcare)
Questionnaires you complete in EPIC MyChart will be sent to your medical record and be available for your provider to view and discuss with you. Your answers will be de-identified (your name and other identifying data are removed or obscured) and added to a secure database of other people’s answers.
The questionnaires in REDCap are a little different. Your answers will go directly into the secure database and not become part of your medical record. Your provider won’t see these answers. The combined de-identified data from all the patient responses in the database is stored on a secure server at OHSU. All transmissions are encrypted with industry-standard SSL (AES 256-bit encryption), and access is regulated.
Researchers can use this combined data to spot trends and identify areas of concern to improve the surgery experience for people seeking gender-affirming surgery in the future.
How often will I complete these questionnaires?
There are many different patient-reported outcome questionnaires, and you will be asked certain ones based on the type of surgery you are having or how far along you are in your surgical process (just beginning, scheduled for surgery, a month to a few months after surgery, or on the anniversary of your surgery).
Some of the questions may be asked only once per year, or every few months, or even at every visit. We recognize that the TRANS PRO surveys can take some time to complete. We recommend dedicating a few minutes to an hour at each interval to complete them. You can always save your responses and then come back to complete them. It's important that we have complete data so that we can best improve gender-affirming surgery for future patients.
The science behind patient reported outcomes
There are hundreds of standard patient-reported outcome questionnaires that have been tested and validated to ensure the answers collected are as accurate as possible. Selecting the right ones for our patients, especially people receiving gender-affirming care, is a constantly evolving process. The goal is to use validated and precise questionnaires to provide actionable data to your treatment team. The exact questionnaires chosen will change over time.
When possible, TRANS PRO uses PROMIS questionnaires, which the National Institutes of Health developed. These questionnaires have been validated across a wide variety of patients and conditions and help to standardize answers for use in research. Transgender patients and community members have evaluated TRANS PRO questionnaires to ensure that questions align with members of the transgender community. Where possible, we have done our best to adapt gender-exclusive language to be more inclusive of the diversity within transgender and non-binary communities.