We asked the public to complete three short polls to inform the design of future research on Childbearing with hypermobile Ehlers-Danlos syndrome (hEDS) and Hypermobility Spectrum Disorders (HSD)…These polls received over 4000 votes!.. THANK YOU!!!
So what did you tell us?
What complications should we ask childbearing women with hEDS/HSD about?
| Answer | Votes | Percent | |
|---|---|---|---|
| Infertility | 100 | 6% | |
| Miscarriage | 151 | 8% | |
| Premature labours/births | 180 | 10% | |
| Abnormal length of labours/births | 173 | 10% | |
| Poor anaesthetic coverage | 213 | 12% | |
| Hemorrhage/excess bleeding | 194 | 11% | |
| Injury/dislocation | 224 | 12% | |
| Abnormal scar formation | 161 | 9% | |
| Tissue trauma/tearing | 205 | 11% | |
| Changes in hEDS/HSD symptoms | 178 | 10% | |
| Other: | 27 | 2% |
| Other Answer | Votes |
|---|---|
| All | 1 |
| Pessery ring use/Preterm labour/ support pre L&D | 1 |
| stargazing/breech births (we can move the babies inside us easily!) | 1 |
| hyperemisis | 1 |
| All of them in order to be able to develop a comprehensive set of guidelines | 1 |
| Unspeakable pain, SIJ separation, spinal blocks | 1 |
| slow healing | 1 |
| Be aware some EDS people give birth so easily nobody believes they are in labour | 1 |
| Impact of medication | 1 |
| Hyperemesis | 1 |
| Placental abruption | 1 |
| Other secondary conditions like PoTS, diverticulit | 1 |
| eclampsia/ pre-eclampsia | 1 |
| Listening and supporting any knock on affect and recovery etc. | 1 |
| absorbable sutures not working and requiring non-absorbable sutures | 1 |
| Particularly SI joint. | 1 |
| Effect of pregnancy on bladder, bowel and digestive function | 1 |
| High level of pain threshold in hEDS patients so their sore will really be agony | 1 |
| Abnormal loosening of collagen causing pain and weakness during pregnancy | 1 |
| Prolapse | 1 |
| Cardiac concerns | 1 |
| Mast cell issues, allergies, sensitivities and intolerances, dysautonomic issues | 1 |
| Pneumothorax in newborns | 1 |
| Recovery after birth | 1 |
| POTS related symptoms, management of low BP, need for support after birth | 1 |
| PGP / SPD earlier in pregnancy with hEds | 1 |
| Fast labour and unstable pelvis forever after… |
Which tools would be most useful in helping maternity staff support childbearing women with hEDS/HSD?
| Answer | Votes | Percent | |
|---|---|---|---|
| Online learning module | 124 | 12% | |
| Toolkit | 113 | 11% | |
| Infographic | 67 | 7% | |
| Decision-making tree | 92 | 9% | |
| University accredited module | 105 | 10% | |
| Blog series | 20 | 2% | |
| Video series | 56 | 6% | |
| Clinical guidelines | 186 | 18% | |
| Leaflets available in maternity units | 150 | 15% | |
| Knowledge awareness summit | 91 | 9% | |
| Other: | 12 | 1% |
| Other Answer | Votes |
|---|---|
| Increased Patient and staff liason | 1 |
| Info pack should be given to mum when jhm noticed at birth | 1 |
| Patient stories; mythbuster facts: too many tacit assumptions in healthcare! | 1 |
| Please look at online communities formed around nerve injuries in childbirth. | 1 |
| Knowledge of the condition | 1 |
| Physicians/OB/GYN/Midwifery CME education toolkit | 1 |
| Staff have a lecture from you to educate them! | 1 |
| Diagnosis if previously undiagnosed | 1 |
| RCOG greentop guidelines on EDS would be amaze-balls! | 1 |
| something like spend time with people who have eds, maybe in a support group | 1 |
| Patient education | 1 |
| Mandatory training for each midwife | 1 |
What should we ask maternity staff about hEDS/HSD in the context of childbearing?
| Answer | Votes | Percent | |
|---|---|---|---|
| Awareness of hEDS/HSD | 137 | 10% | |
| Knowledge of hEDS/HSD | 189 | 14% | |
| Knowledge of related conditions (e.g. POTS) | 178 | 13% | |
| Knowledge of hEDS/HSD diagnosis | 89 | 7% | |
| Knowledge of hEDS/HSD prevalence rates | 59 | 4% | |
| Confidence in caring for women and babies with hEDS/HSD | 173 | 13% | |
| Clinical decision making in relation to childbearing with hEDS/HSD | 180 | 14% | |
| How to improve maternity staffs’ knowledge of hEDS/HSD | 160 | 12% | |
| How to identify hEDS/HSD symptoms and what to do about them | 159 | 12% | |
| Other: | 7 | 1% |
| Other Answer | Votes |
|---|---|
| Everyone is different! Listen to the patient! We have had to learn to deal | 1 |
| cross over symptoms. Impact on common pregnancy conditions eg PGP, preeclampsia | 1 |
| Adult learning principles. What would be useful to the staff | 1 |
| validation of the individual different symptoms | 1 |
| All of the above, trying to educate colleagues about EDS/Chiari is hard work | 1 |
| Incentive to learn – perhaps a way to earn more if they complete a course? | 1 |
| Positioning | 1 |
So how will we use this information? We will use your votes to ensure that the things that matter most to you are included within two international surveys. Once these surveys have been designed, we will be submitting our research plan to the ethics committee at Coventry University for approval. Once ethical approval has been granted, these surveys will be opening very soon to both maternity staff and those childbearing with hEDS/HSD. We hope that the results of these surveys will give us an overall picture in relation to how both maternity staff and childbearing women with hEDS/HSD may be better supported, so please do look out for them and share them where you can.
Many thanks again for all of your responses and suggestions!
If you would like to follow the progress of work going forward..
Follow me via @SallyPezaro; The Academic Midwife; This blog
Until next time…Look after yourselves and each other
