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.
Blocks histamine. Histamine is a signaling molecule, sending messages between cells. Blocking histamine signaling can help to limit allergic reactions…
Limited reports on the efficacy in PFIC but has been trialed in refractory itch (i.e., hard to treat itch).
To decrease pruritis/itch. Limited reports on possible efficacy in PFIC.
A surgery that diverts bile from the small intestine. The gallbladder is attached to the appendix which causes bile to…
Binds to bile acids in the intestine, causing the bound bile acids to be excreted in the stool along with…
A participant reported that Cyproheptadine was prescribed to improve appetite.
Have you received this treatment? Please fill out the survey…
Limited reports on the efficacy in PFIC but has been trialed in refractory (= hard to treat) itch
IBAT inhibitors such as Maralixibat (aka Livmarli) and Odevixibat (aka Bylvay) disrupt the enterohepatic circulation and lead to fecal elimination…
A surgery that connects part of the small intestine to the colon which causes bile to bypass 15% of the…
Used in refractory cases, when complications of progressive liver disease become apparent, or if there is the development of or…
Has been prescribed in patients (usually PFIC 1) with disease associated diarrhea.
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…
Blocks opiate (pain-relieving) receptors in the nervous system. Stimulation of opiate receptors is believed to play a role in the…
Provides nutritional support via nasogastric tube administration, bypassing the usual process of eating. Often enables supplementing of additional nutrition in…
Blocks histamine. Histamine is a signaling molecule, sending messages between cells. Blocking histamine signaling can help to limit allergic reactions…
A surgery where a piece of the small bowel is used to create an external stoma (opening) to drain bile…
Surgical procedure which diverts bile from the terminal ileum (last part of the small intestine) thus interrupting enterohepatic bile acid…
A participant reported to have received this treatment as a temporary solution to drain bile.
Have you received this treatment?…
Rifampicin – increases metabolism of circulating pruritogenic (itch generating) compounds and promotes their excretion in the urine. It may also…
To decrease pruritis/itch
Limited reports on the efficacy in PFIC but has been trialed in refractory cases. (Refractory means stubborn/not…
To decrease pruritis/itch. Limited reports on the efficacy in PFIC but has been reported to both improve itch (PFIC 1…
Poor growth or malnutrition, particularly in patients who are unable to take food by mouth or g-tube.
To decrease pruritis/itch. To decrease cholestasis (cholestasis is the slowing or stalling of bile flow through your biliary system). To…
When low levels are noted on routine screening/testing. Vitamin A deficiency can cause night blindness.
When low levels noted on routine screening/testing. Deficiency can cause rickets, osteopenia (loss of bone mineral density), and osteomalacia (“bone…
When low levels noted on routine screening/testing. Deficiency can cause vision problems and muscular weakness.
Vitamin K deficiency can cause bleeding. Abnormal prothrombin time or bleeding problems.
Prothrombin is a protein produced by your liver. It…
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.