Husbands, Partners have your say
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.
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.
Definition and core outcomes for Hyperemesis Gravidarum
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: firstname.lastname@example.org 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