I gave a talk at The Fertility Show on Saturday about add ons, and promised to put my notes on the blog, so these are some of the key points, and links to useful sources of information.
What are add-ons?
- They are additional treatments which your clinic may offer on top of IVF/ICSI
- They are new or emerging treatments and there may be limited evidence about how effective they are
- Some may have shown some promising results in initial studies but may not be proven to improve pregnancy or birth rates
- Some clinics offer lots of add ons and may give you what looks like a shopping list of additional treatments to choose from. Some don’t offer them. This isn’t an indication of how good or forward-thinking a clinic is – some fertility experts may not be convinced that some add ons are worthwhile or safe.
- Some clinics charge for add ons, others may include particular add ons in the cost of treatment because they think they make a difference and believe they should be part of IVF.
- Add ons can be expensive and may substantially increase what you pay for your IVF
The Human Fertilisation and Embryology Authority (HFEA) has a list of some of the more common add ons you may be offered on their website, and a grading system for them
- Assisted hatching
- Artificial egg activation
- Elective freeze-all cycles
- Embryo glue
- Endometrial scratch
- Intrauterine culture
- Pre-implantation genetic screening (PGS)
- Reproductive Immunology
- Time-lapse imaging
It can be difficult to know what to think about these new treatments, and the HFEA carried out patient survey to try to find out what people thought. The views ranged from those who were very strongly in favour of add ons to those who felt patients should not be offered treatments that we don’t know work. The overwhelming feeling from patients was that they didn’t want to miss out on something which might make a difference, but that this had to be balanced by the need to protect their interests.
Assessing the evidence is key and you want to know is:
- What evidence there is about how effective something is
- What evidence there is about whether it is safe
- Does it carry any risks
- How much does it cost
How do you assess the evidence?
As lay people, when we hear about evidence we may give any research or scientific paper equal weight, but in fact evidence isn’t quite as black and white as we may think.
The best scientific evidence comes from randomised controlled trials. In these trials, people will be divided into those who have the new technique or treatment and those who don’t in a randomised way. It is important when assessing evidence to look at whether the study included all patients or just a specific group. Sometimes research may have a narrow age range, or may have only looked at people with one specific type of fertility problem.
You should also look at the number of people included in the study. The most meaningful research will have involved a large group but sometimes you may discover that studies have taken place in one specific clinic and may involve tiny numbers of people.
Finally, check the outcomes. You want to look at studies where a healthy live birth is the outcome but some studies may stop at a fertilised egg or positive pregnancy test and this may not translate into an increase in births.
How the HFEA can help
The HFEA got together a group of leading scientists and fertility experts to look at all the existing research on each of the add ons, to assess it and to develop a traffic light system for add ons.
There is a green symbol where there is more than one good quality study which shows that the procedure is effective and safe.
A yellow symbol where there is a some evidence or some promising results but where further research is still required.
And a red symbol where there is no evidence to show something works or that it is safe
The decisions made by the group were then re-assessed by an expert in evidence to ensure every traffic light had been correctly assigned.
Not one of the add ons mentioned at the start was given a green light to say that there is “more than one good quality study which shows that the procedure is effective and safe”
There are a few red lights which means there is currently no evidence for assisted hatching, intrauterine culture, PGS on day three and reproductive Immunology. There may also be risks here too so do read the evidence carefully on the HFEA’s information page.
A lot of the add ons fall into amber where more evidence is needed. This includes endometrial scratch, freeze all cycles, egg activation, embryo glue, PGS on day five or six and time lapse.
For two of the add ons in this category, freeze-all cycles and endometrial scratch, there are big multi-centre trials going on at present in clinics across the United Kingdom. If you want one of these add ons, ask your clinic if they are taking part in the trial as you could end up getting the add on itself free of charge (this doesn’t cover the cost of the IVF/ICSI and you may be randomised into the other part of the trial and not get the add on, but it may be a good way forward if can’t afford to pay for the add on)
The cost of add ons
Some clinics offer add ons such as embryo glue or time lapse as part of a treatment cycle to every patient they treat. Others charge, and prices can vary hugely. There is often no discernible reason for wide discrepancies in price, so do look into this by finding out what a number of different clinics are charging for any add on you are considering.
If your clinic offers you an add on, make sure you ask some questions first:
- Why are you offering me this treatment?
- What evidence is there that it works?
- What increase in success have you seen with patients similar to me?
- What are you charging and how does it compare to other clinics?
- If you are charging more, why is this?
There are also some questions to ask yourself:
- Are you happy with the evidence your clinic has given you?
- Have you read the information on the HFEA website?
- Can you afford to pay for it?
- If you pay for it, would it affect your chances of being able to pay for another cycle if it doesn’t work?
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Whatever you decide,make sure you are as fully informed as you can be about your treatment, and make sure you have read through all the evidence on the HFEA website which is there to help you to make an informed decision about your treatment.