What will happen to me?
This is the most common question we're asked when someone has a diagnosis of PSC.
Because PSC is highly variable between patients, it is not possible to predict the symptoms you will experience, how often or how severely. In fact, many people with PSC don’t show any symptoms (asymptomatic) when they are diagnosed. Also, symptoms seem to come and go over time for some individuals. For this reason, your medical history is important in order to establish whether your current symptoms are part of the regular pattern of your disease or if they represent a sudden deterioration. Only around half of people with PSC ever need a liver transplant 7. Despite that, patients and their families understandably struggle with the uncertainty, and want to know what is likely to happen to them 35, what stage their liver disease is at and the life expectancy is for someone with PSC.
Stage of disease in PSC?
Because PSC can cause damage to the bile ducts and to the liver itself, it is not strictly correct to consider stages of disease in PSC. It is more appropriate to consider the damage to the bile ducts and liver separately, because some people have very badly damaged bile ducts yet have a liver with little or no damage. Equally, the bile in the bile ducts can be flowing well, yet the individual has advanced liver damage. Other people have both bile duct damage and liver damage. Disease progression in PSC is an individual matter and often difficult to predict. Your doctor will consider your medical history, imaging results (MRI or other scan), blood test results, other measures such as Fibroscan results (a test used to evaluate how much scarring there is in your liver) and, of course, how you feel, to determine how well you are.
Predicting Disease Progression in PSC
Interest within the PSC community is growing in being able to predict what will happen in the disease course of people with PSC. One of the most common questions we are asked is, ‘What will happen to me?’ It is difficult to answer because of the complexity of PSC.
What affects disease progression in PSC?
The largest ever group of PSC patients was studied by the International PSC Study Group (IPSCSG) spanning 30 years of medical records and 17 countries 7. They not only identified factors that affect rate of progression of PSC, but also how and to what extent they may impact the clinical course of PSC. This study was a major breakthrough in our understanding of PSC and its impact on patients. Given the variation in PSC between patients, these groupings could prove important in identifying those who need closer clinical management and for selecting and studying patients in research studies.
Tools to predict disease progression in PSC
A prognostic tool is something that can be used to predict what will happen to you. For PSC, prognostic tools tend to be a collection of measures and tests such as blood tests and location of damage in the bile ducts. Researchers have studied thousands of patient health records and biological/imaging test results to determine what clues might predict the progression of your disease or how likely you are to need a transplant in the future.