26 February 2014

1. 26 February 2014 • Valerie Peddie • Aberdeen Fertility Centre, University of Aberdeen • Have we got patients on board?

2. The challenges Shift in focus/thinking (default position eSET) Resistance to 'change’ (2nd & subsequent cycles) Preference for DET - success rates Patient Involvement in decision-making Regulation - 10% target Staff Compliance Online Patient Support Forums Overseas Clinics – without UK co-ordination Media portrayal Up to date information (www.oneatatime.org)

3. Issues to consider Patient autonomy - engagement in 'decision-making' Procreative liberty? Female age/history Embryo quality Funding status* 'Incentives‘ (HFEA fee; fresh/cryo cycle package) KPI’s & HFEA target (10%)

4. Effective Team Approach Collaborative efforts essential to success Reinforce consistent message throughout - Patient Info Evening; INUK info; www.oneatatime.org.uk; First Consultation; Prior to egg retrieval; Day of embryo transfer/planned extended culture Confidence in lab/cry/vitrification programmes Default position - 'single embryo transfer'

5. Online patient support forums “ Last post Amy 21 minsago you can insist on double embryo transfer – I did and pregnant with twins!! ”

6. Online patient support forums “ I'm so sad at losing our precious boys just when I was gaining confidence that our dream was actually coming true. I know it's self pitying, but I just can't help but think how unlucky it is that this has happened to us and I’m scared that we may never have children. I'm just hoping for some words of comfort and wisdom if anyone has some to give... ” Twin miscarriage at 18 weeks – feeling lost (anon)

7. The context (& interpretation) of written text “ For starters, some patients might actually want twins! The idea of building a family with only one round of treatment sounds enticing. Another reason is that patients want to optimise their chances of success. Nobody wants a cycle to fail, and transferring more than one embryo seems like the logical way to increase the chance of success. Lastly, fertility treatment is expensive and the idea of having to find the funds to repeat a treatment cycle can seem overwhelming ”

8. The context (& interpretation) of written text “ By electing to transfer one blastocyst instead of two in patients with good prognosis, our data demonstrates that twin pregnancy, with its greater risk to mother and infants, can be nearly eliminated without compromising pregnancy success rates ”

9. Overseas clinics - without UK co-ordination 5 min questionnaires Often no pre-assessment visit required No waiting time No 'regulation' 'Guaranteed' success - ‘shared risk contracts’ 2 or more embryos replaced routinely Subsequent burden on NHS (UK)

10. Media influences…

11. Let’s help minimise the heartache….

12. Conclusions Reinforce eSET policy at every stage - involve patients - guide towards 'One at a Time' Team Approach - positive & consistent Confidence in ‘recommendation’ Confidence in extended culture & cryopreservation/vitrification programmes Discourage online forum use - guide towards INUK 3rd Part Agreement with overseas Clinics - inclusion of eSET criteria Media - work with them to provide balanced arguments Accurate data publication - Evidence

13. Table Discussion Discuss individual centre guidelines/algorithms/patient information and INUK multiple births patient information sheet - share good examples Identify and feedback areas which could be improved - both with your own centre’s information and INUK’s