Add ons – do they add up?

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

They include:

  • 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.

Green lights

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”

Red lights

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.

Amber lights

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.

Key questions

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?

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.

Your views needed!

If you are having fertility treatment, or have done recently, you may have been offered some additional extras on top of your IVF or ICSI. These additional treatments include things like time-lapse imaging, embryo glue, endometrial scratching or reproductive immunology. Not all clinics offer every type of additional treatment. Some may not suggest them at all, others include them in the price of IVF or you may be given the option to pay for add ons if you would like them.

Fertility Network UK, the patient charity, and the fertility regulator the Human Fertilisation and Embryology Authority, or HFEA, is interested in finding out more about what you think about these add ons, how they should be offered and what you need in order to make decisions about whether to pay for them. Most of these add ons are not fully proven to increase your chance of getting pregnant.

If you have had treatment recently or are going through treatment currently, do take a minute to answer the short questionnaire to help them find out more about what your views are on this subject. You can find the link by clicking here

 

Treatment add-ons

ivf_science-300x168If you are currently having fertility treatment, you are likely to be aware of the many different additions that are offered on top of the standard IVF from immunology treatments to time-lapse imaging. Yesterday’s Independent contained three articles on the subject;  a news story, details of some of the treatments which may not be evidence-based and an editorial suggesting that clinics should not be offering unproven treatments. It is worth reading if you are thinking of having treatment.

It is to be welcomed that the Independent are exploring this issue – it is something which has been a concern to many of those supporting patients for some time as more and more additional treatments are offered in fertility clinics, just a few of which are listed in the paper. Patients are often worried that if they don’t pay for extras they will be reducing their chances of success, when there isn’t a strong evidence base to support this as the leading experts quoted in the articles explain.

I’m not entirely sure I agree with the editorial though, which seems to put some of the blame for this back at the door of fertility patients with the suggestion that  “We also live in an age in which people do not like to take no for an answer. Some couples may be reluctant to face the fact that there may be no simple answer to their fertility issues. If one treatment does not work, the temptation is to demand another.”.  Patients are not likely to demand different treatments if clinics don’t offer them, and it seems to me unfair to be blame patients for the fact that clinics are offering unproven treatments. In fact, the editorial does go on to say that “the onus lies on the clinics – not the patients – to be the voice of realism“. It also claims that only a quarter of women who have IVF conceive – this may be true of an individual cycle of treatment but cumulative outcomes are far higher – many of those who conceive after IVF treatment did not get pregnant in the first cycle.

If you are having fertility treatment and are being given the opportunity to pay for additional extras, it is really important to make sure that you are clear about the evidence. The best kind of evidence comes from a randomised controlled trial (an RCT) and it is always a good idea to ask whoever is treating you to point you in the direction of evidence in the form of an RCT to suggest that paying for an extra treatment is a good idea.

Have you paid for extras when having NHS fertility treatment?

images-6Access to NHS-funded fertility treatment in the UK is still a postcode lottery, and what you get depends entirely on where you live. What’s also becoming more apparent is that in some areas people are paying for additional tests and treatment when they are having NHS-funded IVF or ICSI, but this doesn’t happen everywhere.

Some fertility patients are paying for time-lapse imaging, for endometrial scratch or for embryo glue for example – and others are reporting being asked to cough up for tests before treatment such as AMH tests or even sperm freezing and storage.

Your experience of extras for NHS-funded IVF 

The patient support charity Infertility Network UK is trying to build up a picture of what people are currently experiencing, so if you’ve paid for any additional tests or treatments on top of your NHS-funded IVF or ICSI, it would be really useful if you could let them know. All responses will be totally confidential, and you can email katebrian@infertilitynetworkuk.com.  If you have paid and are able to give a rough idea of how much you have paid this would be helpful, and they would also like to hear from you if you would have liked to pay for some extras but this was not permitted.

Could you help a research team?

Would you be able to spend a couple of minutes completing a quick questionnaire to help a research team who are planning new project? They want to know your views about time lapse imaging which some clinics are now offering with IVF/ICSI treatment. They want to know if fertility patients think a research trial to see how effective this is would be useful – you don’t need to have any personal experience of it but you do need to have had or be going to have IVF/ICSI.
If you have a spare couple of minutes, you can find their questions here – https://www.surveymonkey.com/s/66KDPTQ

Fertility research – can you help?

Would you be able to spend a couple of minutes completing a quick questionnaire to help a research team?

They are keen to find out people’s views about time lapse imaging which some clinics are now offering with IVF/ICSI treatment. They want to assess whether fertility patients think a research trial to see how effective this is would be useful. You don’t need to have any personal experience of it but you do need to have had or be going to have IVF/ICSI.

If you have a spare couple of minutes, you can find their questions here – https://www.surveymonkey.com/s/66KDPTQ