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 educational 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 |
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 💚💙💜❤
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Dr Sally Pezaro 