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.
The intestinal absorption of vitamins A, D, E, and K is strongly dependent on the liver’s ability to secrete bile acids into the intestine because these vitamins are fat soluble. In PFIC and many other cholestatic diseases, fat malabsorption occurs along with fat-soluble vitamin deficiencies. Therefore, supplementation is needed for the fat-soluble vitamins. Water soluble vitamins are not affected. Vitamin levels of A, D, E, and K may be routinely checked, and supplementation started if levels return low. In addition, certain fats (such as medium chain triglycerides, MCT’s) have been shown to be more easily absorbed, even with poor bile flow, and diets may be adjusted to maximize MCT consumption.
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.