• PRO stands for "Patient Reported Outcome." What does this mean?

  A "Patient Reported Outcome" (or PRO) is a questionnaire commonly used in the clinical world to measure a patient's quality of life (QoL).  Doctors and scientists often use PROs in medical research to understand if a drug is working in clinical trials.  Members of the PatientsLikeMe Community with Epilepsy will have access to an online version of these PRO questionnaires to help understand the effect of your disease on your everyday life and give you a voice in real-world, real-time research.

• Why is it listed on my profile as PRO and quality of life (QOL)?

  We use both terms because they are related. The PRO is the type of questionnaire and it measures your "Quality of Life" (including your physical, mental and social well being). The PRO survey asks a series of specific questions about how you're functioning physically, socially and mentally, and your answers will generate a score (or measurement) that appears in your Quality of Life chart on your profile.

• Why should I take these surveys?

  You can learn more about how epilepsy affects your quality of life and at the same time have a voice in a new area of medical research.

  Feeling in control of your epilepsy means more than just tracking the frequency of your seizures.  By completing these surveys, you will learn how your epilepsy affects your whole health (such as physical, social and mental well-being) and see how your experience compares with other patients in the community.

  Never participated in a clinical study?  Now you can.  The official PRO survey is one of the ways the healthcare industry evaluates how epilepsy affects a patient's well-being.  By participating in this online version, you will be contributing directly to ongoing research about patients' real-world experiences with epilepsy.  With the PRO, researchers are not only studying how many seizures you have, but also how you're doing each day.  This information will shape what kind of outcomes are measured in epilepsy clinical trials.

  You have a voice so let's hear it.  Researchers and the makers of drugs are all ears.

• What am I required to do? What do I need to do to participate (become a PRO)?

  It's easy as 1, 2, 3...

  1. The first survey, PRO1, will be available for you to take once you've completed some background information about yourself and your experience with epilepsy.
  2. Three months after taking the first survey, you will have access to PRO2. It'll be open for you to take during a 30-day window.
  3. The final survey is accessible a 3 months after taking PRO2. Take PRO3 any time within its 30-day window and you're officially a PRO.

  Since this is an online version of the survey used in the clinical world, there is a timeframe in which the surveys must be taken. Don't worry - we'll remind you when and where to go when the time comes.

• How is my PRO data being used?

  PatientsLikeMe and pharmaceutical company UCB partnered in 2010 to understand more about the real-world experiences of people living with epilepsy. Together, PatientsLikeMe and UCB researchers analyzed the survey results, published findings at leading epilepsy conferences, and shared interesting results with the PatientsLikeMe community. Over the course of the project, patients like you completed a few thousand of these surveys; that's the largest PRO study of its kind ever conducted. Even though the official PRO study in epilepsy ended in 2011, we continue to make these PRO surveys available to you to measure your quality of life, as well as to inform others about how this condition impacts your everyday life.

• Who do I contact if I have questions about becoming a PRO?

  As always, feel free to reach out to our staff with any questions via the forum, private message or email us at support@patientslikeme.com. 

• What happens after I take all three PRO surveys?

  Congratulations, you're officially a PRO!  You'll have a PRO badge that will appear on your profile, and your survey data will be made available for researchers to learn more about epilepsy.  You can also see how your quality of life has changed over time, and share your survey results with your doctor by printing them out. 
  
  As a PRO, you'll also be able to continue measuring your quality of life over time with a new and improved QoL survey that you can take as often as you'd like.  This new survey will appear on your profile when you complete your last PRO.

• What if I miss my window to take PRO2 or PRO3?

  Don't worry!  If you miss the window to take PRO2 or PRO3, you'll still have an opportunity to become a PRO.  You'll be prompted to start the survey series over again, starting with PRO1 and we'll continue to remind you when it's time to take the second and third surveys.  Since this is an online version of the survey used in the clinical world, there is a timeframe in which the surveys must be taken so researchers can use them properly to learn more about the disease. 
  
  Note:  All of your survey results, regardless of whether you missed your window or not, will be saved and reflected back to you on your profile.  For your survey results to be included in the research, you must take the PROs in the timeframe provided.

Need more help? Email support@patientslikeme.com