The MifeMiso trial
After a missed or incomplete miscarriage, women usually have the option of conservative (natural), medical or surgical management. The MifeMiso trial, published in 2020, showed that taking misoprostol and mifepristone was more effective for the medical management of miscarriage vs. misoprostol alone. In August 2023, NICE guidelines were updated to direct healthcare professionals to give both medications.
Tommy’s were given funding from the National Institute for Health and Care Research (NIHR) to disseminate the research and develop new patient information.
Making decisions after missed or incomplete miscarriage
I led on the creation of a new decision aid leaflet and a patient information animation. Both were developed in consultation with a stakeholder group of experts and women with lived experience, with detailed feedback and discussion at every stage.
80 people from our baby loss support community shared their experience of decision-making after a missed or incomplete miscarriage. From this group, we recruited 7 women for a 90-minute online discussion about their experiences and needs.
I feel all of the prepared information online completely misses out the graphic details of what to expect, what supplies you might need, how you might feel.
Focus group participant
Our expert steering group included researchers, specialist doctors and midwives and the chair of the Association for Early Pregnancy Units.
The ideal decision support – sensitive, compassionate and honest conversations
The ideal decision support after missed and incomplete miscarriage is sensitive, compassionate and honest conversations with healthcare professionals about options and implications, with enough time to ask questions and consider options.
Sadly, this does not happen consistently. Different hospitals have different processes which makes it difficult to create information that meets everyone’s needs. Some healthcare professionals having these conversations are inexperienced and unaware of the nuance and sensitivity needed.
New decision aid
The decision aid aims to give honest and practical information to help people decide what is right for them and their family. It can act as a guide for less experienced doctors and nurses having these conversations. It complements existing information and works with Tommy’s more detailed online information – but can also stand alone. We included suggested questions that could help people understand their options and prepare themselves for the procedure in their individual hospital.
It’s available as a downloadable PDF or printed as an A4 foldable leaflet with the decision aid table across both inside pages. It is translated into Urdu, Polish, Romanian, Punjabi, Ukrainian and Portuguese.
250 printed copies were distributed to every EPAU in the mainland UK (approx. 220).
I have received your free leaflets, thank you. This is just the kind of information that we were looking at producing for our patients. We feel that this will be a very useful tool to support our patient’s decision making and will work very well alongside our treatment management information.
EPAU nurse
Further information on miscarriage – animation and written content
The decision aid also contains signposts (QR codes) to information in different formats – including the new animation, ‘Missed miscarriage – what happens next?’ and the miscarriage section of Tommy’s website (which I reviewed and updated at the start of 2024).
Digital distribution difficulties
Frustratingly, we did have some difficulties with distribution. In all its AI wisdom, YouTube decided that the mention of misoprostol and other elements within the animation meant it was information about abortion. It insisted on a public health information banner to reflect this, sitting below the content. Although I have absolutely no problem with abortion content, this kind of information could be distressing to people searching for support managing a miscarriage. Sadly, no amount of reports and requests for review has managed to remove this banner.
In the same vein, we had difficulty promoting it on Bing and TikTok at all. Requesting a review led to our distribution agency’s business account being suspended. In the end, we focused all our distribution budget on YouTube.
But despite this, I’m really proud of the new content and I hope it can make a real difference to people at a very difficult time. It has been downloaded 1452 times in the last 4 months. I recently received this message too, which shows how beneficial taking part in focus groups and sharing lived experience can be too.
I just wanted to email to let you know some good news. After years of issues following my missed miscarriage, I am currently 17 weeks pregnant and heard my baby’s heartbeat for the first time yesterday. I think taking part in the MifeMiso project was subconsciously very healing and I’m really glad I was able to contribute. Thank you for giving me the opportunity.’