Journey into the world of hyperemesis gravidarum
The amazing and wonderful Hyperemesis Education and Research (HER) Foundation in the USA are developing a tool which can be used to assess the severity of a woman’s HG symptoms and their impact on her life. Currently the only commonly used tool is the PUQE Score which is handy for distinguishing between regular morning sickness and hyperemesis gravidarum and for assessing the severity of nausea and vomiting in pregnancy. But for women with full blown HG it’s not a lot of help for assessing whether treatments work and so on, which is why Kimber and team are developing a new one!
This is different to the work by the team in Amsterdam which are looking at a definition in the first place and outcomes which can be measured specifically for research purposes. Instead this is a tool which can be used by women, their families and their healthcare providers.
So how can you help? Well to take part you need to be currently pregnant and suffering. Then you click on the link below and fill it out. If your symptoms change over the coming weeks you can fill it in again and again, basically using it as the tool it is intended to be… this will alow the researchers to see how useful it is, hone it and perfect it!
If you’re not currently pregnant but would like to support this kind of work then please consider donating to one of the charities pushing the research agenda either, click here for more info on donating.
I wrote a few weeks ago regarding the exciting new research happening in The Netherlands to develop an internationally recognised definition and core outcome set for hyperemesis gravidarum. This research will have wide reaching implications for all future HG research and, if done well, will have an incredibly positive impact for HG sufferers for generations to come. I’m on the steering group for the research and following a recent meeting in which I proposed that the opinions of the partners and carers of women affected by HG should be included, we are now recruiting partners and carers to the project. (We have more than enough women recuited already but could still do with more healthcare professionals!!)
I believe the voice of partners and carers is absolutely vital to this research as they represent a group with potentially a different agenda to the medical professionals and the women themselves… HG is a condition which affects the whole family and how the condition is defined and outcomes from treatments measured impact the partners, carers and any other dependants in the family. Partners and carers are the women’s advocates and often the only people who really see the suffering involved.
By partners and carers I mean anyone who is/was the woman's main carer during an HG pregnancy, it could be her husband/wife/life partner or it could be her mother, sister, father or best friend. It's the person who drove her to appointments and advocated for her, the person who saw whether the medication was working or not and how the condition impacted her ability to live a normal life... if you watched a loved one suffer like that then please consider getting involved. Vitally... we need INTERNATIONAL representation so please share with people abroad.
So on that note I’m handing over to the official information from the lead researcher Dr Iris Grooten:
Definition and Core Outcomes for Hyperemesis Gravidarum
Can you help?
We are looking for your help to improve research on treatment options for hyperemesis gravidarum (severe nausea and vomiting in pregnancy).
Why we need your opinion
Hyperemesis gravidarum (HG) has significant consequences for maternal wellbeing, is associated with adverse birth outcomes and leads to major health care costs. Treatment options are symptomatic and hampered by the lack of effective, evidence-based options. One of the reasons for this lack of evidence is the use of a broad range of HG definitions and outcome measures. This makes it difficult to compare trial results. As a consequence, doctors may not know how to approach and treat HG patients. We believe an international consensus statement of all important stakeholders is needed. This consensus on HG definition and outcomes measured in trials would facilitate meta-analysis and implementation of trial results in guidelines, to ultimately improve care for women and their offspring.
We need your help! We have produced an online survey according to the Delphi methodology. All important stakeholders, including researchers, obstetricians, patients and carers, midwifes, general practitioners, dieticians and nurses are invited to participate in the process of item selection for inclusion in the HG definition and core outcome set. This selection process will take part over four survey rounds between June and September 2016. They all take no more than 10- 15 minutes of your time. If you would like to take part it is important that you complete all rounds.
Your participation will be of great importance for the success of this project. We appreciate your input as it will be of great importance for the future of HG research. Your participation is voluntary and you can always withdraw from the study at any time. If you are a patient, your participation will not affect your healthcare.
All data gathered during this project will be handled with confidentiality and saved under code without your contact details. Only the Investigator has access to the data. The results of this study may be published as a scientific paper and if so, all data will be anonymized. Please contact us if you have any questions by email: email@example.com or telephone: (0031) (0)20 5668483.
Thank you for your help!
On behalf of the DCOHG-project group:
Prof. Tessa Roseboom, Dr. Rebecca Painter, Drs. Janneke van ‘t Hooft,
Drs. Iris Grooten
In a sea of puke, pain and suffering comes a beacon of hope for women with Hyperemesis Gravidarum. The launch of the first ever Green Top Guidelines by the Royal College of Obstetricians and Gynaecologists is here today. These guidelines will provide a comprehensive and evidence based treatment plan for women who present with pregnancy sickness which is worse than the regular old morning version.
And I am thrilled with them! Okay so they have a couple of minor issues (such as suggesting ginger for milder "nausea and vomiting of pregnancy" symptoms) but they have done the absolute best they can with the available research currently out there.
You see there is something a little but special about these guidelines... The patient's voice is not only at the very heart of them but is running through the arteries, veins and capillaries. Three Trustees for the UK Charity Pregnancy Sickness Support (PSS) were on the Authorship of the guidelines and have worked tirelessly with an amazingly knowledgeable and compassionate team to make sure these guidelines will do what they intend to do... HELP WOMEN! On top of that dozens of PSS volunteers commented and gave feedback on early versions and those comments were listened to and incorporated! This is in stark contrast to the vast array of naff "research" and even the weighty systematic reviews which have been published over the last few years in which no one ever thought to ask women "What's it actually like to have HG and what outcomes matter to you?"
The lead author, Miss Manjeet Shemar of Birmingham Women's Hospital is a Trustee for the charity and a sufferer herself. Since her own experience, which despite being on of the country's leading ob/gyne's was utterly miserable, she has worked tirelessly to improve services and treatments for other women. She established the UK's first HG Day Unit where women can receive treatment in the day and return home to her family at night. She has helped a number of hospitals to establish similar services and she personally oversees the care of hundreds of women affected by HG each year. So, you see, she is ideally placed to ensure that these guidelines as as good as the possibly can be for the women, and indeed the clinicians who need them.
So why are they needed and what difference will they make I hear you ask?
Until now a common reason women are refused treatment is the simple fact there were no guidelines. None of the medications we have in the UK are licensed to use in pregnancy; that's not to say they aren't safe, just that the manufacturers don't want to take any responsibility! And so the onus of responsibility has always fallen on the shoulders of the prescribers... the doctor whose name is on the prescription. The Thalidomide tragedy may have been nearly 60 years ago now but the shadow it cast was long and many doctors (and women themselves) live in the fear that shadow creates. These guidelines are not suggesting any new revolutionary treatment, they are mearly lifting the weight of the responsibility off the doctors shoulders. They treatments the guidelines suggest have all been around for decades. Even ondansetron, which many doctors think of as "new" has had two full decades of use and the teenage children of its first prescribers, I'm sure, are exceedingly grateful!
These Guidelines will give doctors the freedom to prescribe without the feeling that they have to undertake their own thorough literature review for every case they come across! In fact, it does more than that... it liberates them to try a number of different options in a step-wise approach to find the right treatment for the individual woman, which is exactly what Pregnancy Sickness Support and I have been advocating for years!
But what if my doctor hasn't heard of them?
Gone are the days of women printing off top notch information from websites such as Pregnancy Sickness Support, feeling empowered approaching their doctor only to be crushed with a "I'm not doing that... anything off the internet is nonsense". Women are totally entitled to request these Green top Guidelines are followed and used for their treatment. Admittedly, doctors don't have to follow them but they would have to have a very good, evidence based, reason not to! These are the Gold standard and that is that and now they're out they'll be updated as new research and evidence comes out.
Another amazing thing is that it's not just UK women this is going to have a wonderful impact on... the RCOG Green top Guidelines are respected and used around the world and women in pretty much any country can access them and request they are followed... they may be resisted in some countries but most will be as pleased to see them as I am!
So there we have it... the first glimmer of light at the end of the tunnel... a few more years and the end of the tunnel will be in full view. And by the time our daughters are having their children we'll be stepping out of the tunnel all together.
Being interviewed for Good Morning Britain
As you are likely to know, research into hyperemesis gravidarum (HG) has been massively hampered by the simple fact that as yet we have no agreed definition of HG and no agreed outcome measures for testing treatment. Some studies look at days in hospital, some use a tool like the PUQE Score, others look at how
many anti-emetics are needed but because none of them measure the same things in the same way we cannot metanalysis the data. More importantly from my point of view is that NONE of the studies done so far have asked women and healthcare professionals “What do you think we should measure?”… until now!
The wonderful team in The Netherlands; Iris Grooten, Tessa Roseboom, Rebecca Painter, Janneke van’t Hooft, who I have had the pleasure to meet and am now collaborating with, are heading up a massive international Delphi Study to establish a definition and Core Outcome Set which will reshape the future of HG research for generations. And we need YOU to be part of it!
They are looking to recruit researchers (including editors, policy makers and guideline developers), obstetricians, patients, midwives, dieticians, general practitioners and nurses to participate in this study. They can be from anywhere in the world, in fact, the more nationalities that are represented the better!
They have already recruited a LOT of patients and therefore at this stage we don’t need more patients to sign up, however, you can help by forwarding this to your midwife, GP or any other healthcare professional you know with an interest and ask them to take part.
What will it involve?
A Delphi study is conducted as four rounds of an online survey over the next few months. If you want to take part it is important you complete all four rounds so that the outcomes can be narrowed down to a consensus. After that a consensus meeting will take place with the key stakeholders to finalise the Definition and Core Outcome Set.
Your participation is voluntary and you can always withdraw from the study at any time. If you are a patient, your participation will not affect your healthcare or professional position.
All data gathered during this project will be handled with confidentiality and saved under code without your contact details. Only the Investigator has access to the data. The results of this study may be published as a scientific paper and if so, all data will be anonymized.
You can contact the team directly if you have any questions by email: firstname.lastname@example.org or telephone: (0031) (0)20 5668483.
Want to get involved?
As the Pregnancy Sickness Support Volunteer Conference gets closer we are confirming the details of the day and getting the word out to as many current and future volunteers as possible.
The charity is lucky to be supported by a wonderful PR expert Jo Crosby who has suffered with the condition herself and will presenting at the conference. Jo has put together a fantastic press release about the event.
BRISTOL TO HOST PREGNANCY SICKNESS SUPPORT CONFERENCE ON 14th MAY
Conference Follows Opening of Pregnancy Sickness Unit at St Michael’s Hospital in Bristol and
Aims to Turn Sufferers into Supporters and Recruit More Volunteers in the South West & Wales
CORNWALL, 28th April 2016: On Saturday 14th May, Bristol will host the third conference for volunteers and supporters of the charity Pregnancy Sickness Support. The conference is a hands on training day for volunteers, enabling skills and knowledge development alongside networking and sharing opportunities. Attendees can meet the Patrons and Trustees and have the opportunity to learn more about getting involved with the international research agenda for Hyperemesis Gravidarum and to find out about volunteering for the charity.
The conference follows on from the opening of a new hyperemesis unit for pregnant women at St Michael’s Hospital in Bristol, which aims to improve the treatment of Hyperemesis Gravidarum. Pregnancy Sickness Support welcomed news of the new unit at St Michael’s, although it is one of only 17 in the UK and Ireland and the charity continues to campaign for more units plus better treatment and support for women with the condition.
“We have previously hosted conferences in Nuneaton and Birmingham and these have been a tremendous success in raising awareness of the condition, educating our supporters and helping to build a bigger network of volunteers,” said Caitlin Dean, Chairwoman of Pregnancy Sickness Support. “We will have some inspiring speakers join us at the conference and it is also great opportunity for the speakers to also learn more by meeting with those who have directly suffered from the condition.
“We now have a network of over 200 volunteers across the UK, but we are looking for more people to join us and help support women with this debilitating condition. We currently have a shortage of volunteers in Wales and at this very time we are supporting a number of women in the South West in their pregnancies. We would be delighted to welcome current volunteers, those interested in volunteering or finding out more and Midwives and Medical Professionals to the conference so we can ensure that women suffering with this condition get the very best care and support during their pregnancy.”
Founded as a Charitable Trust in 2002, Pregnancy Sickness Support is a registered UK charity working to improve care, treatment and support for women suffering from Nausea and Vomiting in Pregnancy and the severe form of the condition; Hyperemesis Gravidarum. Pregnancy Sickness Support is a small charity, relying heavily on donations and fund-raising from sufferers and the work of volunteers.
Nausea and vomiting in pregnancy affects 70-80% of pregnant women to a greater or lesser extent. Over 30% of women in paid employment need time off work and 1 in 100-150 women will be admitted to hospital due to the severity of their condition. This extreme end of the nausea and vomiting spectrum is called Hyperemesis Gravidarum, which is a severe and potentially life threatening condition which can have a profound effect on the sufferer’s health and wellbeing.
Volunteers can support the charity in a number of ways, including fundraising, awareness raising and peer supporting enabling them to develop and use their knowledge and skills to gain positive outcomes from their experience of Hyperemesis Gravidarum. Volunteers had this to say about their work for the charity:
- “As volunteers we may not be able to find the cause and cure for HG, but one thing we can do is lessen that feeling of isolation and not being understood. I longed for such support during my first pregnancy... and vowed to myself at that point I would try to find fellow sufferers and give them the help I never got. Second time round I was bombarded with love, information and support thanks to Pregnancy Sickness Support and also Beyond Morning Sickness. The difference these people made was indescribable and I feel so privileged to be able to support others in the same way. To offer them hope, give them information at critical times, and keep shining a torch through their dark tunnel is such a rewarding, and also therapeutic, thing to do. In some cases I have been told the support has made the difference between life and death. Volunteers are crucial and I feel so privileged to be one,” - Heather Miranda.
- “It helped me feel useful again. Sharing a common knowledge and experience has been healing in many ways,” - Katy Roberts-Dempsey.
- “A Pregnancy Sickness Support volunteer helped me get survive Hyperemesis Gravidarum and, without a doubt, I couldn't have done it without their support. Volunteering means I might be able to support someone else going through hell and, hopefully help them cope even just a little bit, until it's over,” – Lisa Lee.
- “It's great to be able to give something back to a charity that helped me through my pregnancy. It's rewarding supporting a fellow sufferer,” - Amy Seemore.
The conference will take place at the Engine Shed, Station Approach, Bristol, BS1 6QH, starting at 9am on Saturday 14th May and concluding at 4pm. The conference will be opened by Pregnancy Sickness Support Patron Lady Cumberledge (NHS Maternity Review Chair).
Tickets for the conference are priced at £20 each and are available online here. Bursaries are available if cost is an issue to attending and further information is available on the Pregnancy Sickness Support website here. There are only 50 tickets remaining and booking in advance is required.
Full information about the conference can be found online here.
For further information please contact:
East West Communications Ltd
T: 07131 85975
Jo Crosby is a freelance public relations consultant and writer. She has worked for Reuters, Getty Images, A1GP, Financial Times and Time magazine. She can be found tweeting @jocrosbypr
TICKETS / CONFERENCE ENQUIRIES:
Pregnancy Sickness Support
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In conjunction with Pregnancy Sickness Support and Plymouth University I am looking for women who have been treated for HG in the last 2 years in the UK to take part in a research survey. Please click here to find out more.
I am mother of three beautiful children and wife to a fantastic and supportive husband. I am a nurse, a farmer and a trustee for Pregnancy Sickness Support. I love working hard and spending time with my kids.
About this blog
Information and support for pregnancy sickness and hyperemesis gravidarum. Views are my own and do not represent those of any other organisation. Information provided here should not be a substitute for medical advice. My aim is to raise awareness and encourage sufferers to know they are not alone.
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