What are Patient Reported Outcomes (PROs)?
A PRO is any report on the status of a patient’s health condition that comes directly from the patient, without interpretation by a doctor or anyone else.
Here is an example of the type of question a patient may be asked:
In the last 7 days, how OFTEN did you have a HEADACHE?
1- Never
2- Rarely
3- Occasionally
4- Frequently
5- Almost constantly
This unique type of data has been used to improve engagement and facilitate patient-physician discussion among cancer patients. PROs add value to understanding survival and quality of life outcomes of cellular therapies.
How has PRO data been used at CIBMTR so far?
Click this link for summaries of the studies that have used PRO data.
How does CIBMTR collect PRO data?
CIBMTR asks participants in the PRO Data Collection Protocol to answer surveys electronically or on a paper form. The surveys typically take 15–20-minutes to complete.
Surveys are sent at the following timepoints:
- Pre-infusion
- Day 30 (CAR T only)
- Day 100
- Day 180
- Year 1
- Annually
The surveys include questions about the below topics:
- Physical Function
- Fatigue
- Sleep Disturbance
- Pain Interference
- Anxiety
- Depression
- Cognitive Function
- Social Roles and Activities
- Sexual Function
- Financial
- Demographic information
Participants are free to skip any question or stop the surveys at any time.
Who is eligible for the PRO Data Collection Protocol?
Any recipient of a HCT or CART in a CIBMTR-affiliated center may participate in the PRO protocol. When asked if they agree to be contact for future research, patients who say “yes” are eligible.
What data has been collected so far?
Use this link to view an up-to-date table showing the number of patients enrolled in the CIBMTR PRO Data Collection Protocol.