The PFIC IMPACT web app was funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington Engagement Award (EASO-30455).
It was collaboratively designed by PFIC patients and clinicians to:
During several focus groups, we have started to compile clinical information about the different treatments as well as patients’ experiences with them.
This app is a dynamic work in progress. The info you can see right now is just a starting point. We will continue to update it when patients or their family members enter their experiences with treatments through the app. After you’ve had a chance to explore, please consider contributing your treatment experiences to help make this an even more well-rounded source of information for our community!
This is a community-built information tool based on patient self-reported experiences. It is NOT representative of a systematic scientific review of available treatments. Research is always ongoing, and more info will be added as more people contribute their self-reported patient experiences.
Please note that patient experiences with PFIC treatments are unique. Treatment effects can depend on many factors, for instance which other surgeries a patient has had in the past, or which other medications a patient is currently taking. Even if multiple patients experience a certain benefit or side effect, this does not mean you will!
PFIC Network is not prescribing or advising any treatment. Please talk to your doctor to make any treatment decisions for you or your child. This app is a resource for you to learn a bit more before you talk to your doctor, or to go through this app together with your doctor.
The statements presented in this web application are solely the responsibility of PFIC Network, and their contributing clinicians and families, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee.
MCT stands for Medium chain triglycerides. MCTs do not require bile salts for absorption. Patients who have malnutrition, malabsorption or particular fatty-acid metabolism disorders are treated with MCTs because MCTs do not require energy for absorption, use, or storage. MCT-based formulas contain higher levels of MCTs, which are more water soluble and more efficiently absorbed even with poor bile flow.
Poor growth or malnutrition.
PFIC patients & the community have
reported the following experiences:
Of the six main areas mainly affected by PFIC, patients & the community have identified the areas impacted by this medication.
If you’d like to learn more you can
do so by visiting our Resource page.
The PFIC IMPACT web app was funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington Engagement Award (EASO-30455).
It was collaboratively designed by PFIC patients and clinicians to:
During several focus groups, we have started to compile clinical information about the different treatments as well as patients’ experiences with them.
This app is a dynamic work in progress. The info you can see right now is just a starting point. We will continue to update it when patients or their family members enter their experiences with treatments through the app. After you’ve had a chance to explore, please consider contributing your treatment experiences to help make this an even more well-rounded source of information for our community!
This is a community-built information tool based on patient self-reported experiences. It is NOT representative of a systematic scientific review of available treatments. Research is always ongoing, and more info will be added as more people contribute their self-reported patient experiences.
Please note that patient experiences with PFIC treatments are unique. Treatment effects can depend on many factors, for instance which other surgeries a patient has had in the past, or which other medications a patient is currently taking. Even if multiple patients experience a certain benefit or side effect, this does not mean you will!
PFIC Network is not prescribing or advising any treatment. Please talk to your doctor to make any treatment decisions for you or your child. This app is a resource for you to learn a bit more before you talk to your doctor, or to go through this app together with your doctor.
The statements presented in this web application are solely the responsibility of PFIC Network, and their contributing clinicians and families, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee.