It is now just over 3 months since a discontinuing treatment decision making model was proposed to help aHUS patients make a decision on whether to stop complement inhibitor treatment or not. (See links to original articles below.)
This proposed model was designed from the patient’s perspective and not for clinicians. Clinicians are calling out for such guidelines but it is aHUS patients that this model is aimed at. It is designed to help them articulate where they stand on a matter that needs to be a joint informed decision.
It is based on research and academic articles from around the world which have been used to determine what important answers are needed for an informed .
Prediction of the chances of relapse is important but mitigation of any risk of harm done is more so.
So gathering evidence about predictive factors is embedded in the model but also establishing whether any discontinuation is done in a safe way and with assurance that any need to return to care is done rapidly if relapse is suspected.
Predictions are predictions but care pathways must be pre-established and honoured. Both the patient and clinician must be in full agreement on this.
As a reminder this is the model.
The underpinning design of this model undoubtedly a cautious one. Whilst there are no absolute guarantees it shows that in some circumstances some patients can be free from treatment for long periods and sometimes for life.
The model s neither reckless nor over apprehensive as some may advocate.
Over the past three months there has been feedback on its utility. Some have said it supported their decision to discontinue. Some even suggested showing the model to clinicians as a basis for a dialogue before a decision .
It being a basis for an informed doctor/ patient dialogue is what this proposed model is for in the absence of any “official” decision making guidelines.
More feedback is still needed from those who have had things go wrong and whether they would think with hindsight if anything in this model could have influenced the decision before it was made. Or not as the case may be, and whatever that omitted factor might be.
The science around complement inhibitor treatment discontinuation transcends the specific technology and will be built on over the coming decades. Genetic factor predictivity will develop and become more specific to individuals.
However consistent, assured, proper, and safe return to care pathways can be established now.
This proposed model contributes to that message.
Article No. 693
TO STOP OR NOT TO STOP – THAT IS THE QUESTION?
You have had aHUS. The type of aHUS caused by uncontrolled complement, not the other type. You got access to a complement inhibitor. It WORKED. You tolerated the drug. Your…
AN aHUS PATIENT’S TREATMENT DISCONTINUATION MODEL
Without any further comment here is the model mentioned in the previous article ( which if you have not already seen can be read HERE ). Have a go at…
