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Myelomeningocele is a malformation of the spine and spinal cord, generally diagnosed prenatally, and responsible for a complex disability for the unborn child. In the event of continued pregnancy, in utero surgery can be performed to improve the prognosis of the children. This fetal therapy does not allow a cure and induces risks for the fetus, and for the mother, both during surgery and for her obstetric future.
Currently, few studies have focused on the factors influencing the choice to resort to in utero surgery and the experience of patients and co-parents before and after this intervention. No qualitative study on the subject has been published to date.
The study population corresponds to all couples who have chosen to continue the pregnancy in the face of a prenatal diagnosis of myelomeningocele in their fetus as well as to resort to in utero surgery to repair this malformation. In order to obtain the largest possible sample, the study will be offered to both couples who have had open surgery and those who have had fetoscopy.
This study aims to investigate, a posteriori, the experience of couples who have chosen fetal surgery to repair a myelomeningocele.
This is a study in clinical psychology, cross-sectional observational with an approach that will be mixed, qualitative and quantitative.
In practice, the only procedures added by the research will consist of:
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Parents of children operated on in utero | Other | Semi-structured interviews with a psychologist |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Semi-structured interviews with a psychologist | Other | Semi-directed interviews using an interview guide on different themes |
|
| Measure | Description | Time Frame |
|---|---|---|
| Studying the experience of couples who have chosen fetal surgery | Semi-structured interviews with a psychologist | up to 18 months |
| Measure | Description | Time Frame |
|---|---|---|
| Investigate the decision-making factors that contributed to the choice of prenatal surgery | Semi-structured interviews with a psychologist | Up to 18 months |
| Evaluate the quality of the information that couples received regarding the three possibilities proposed when faced with a prenatal diagnosis of myelomeningocele |
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Inclusion Criteria:
Exclusion Criteria:
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| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Lucie GILBAUD, MD | Contact | 00 33 6 31 82 32 71 | lucie.guilbaud@aphp.fr |
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Service de Médecine Foetale Hôpital Armand Trousseau | Recruiting | Paris | Paris | 75012 | France |
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| ID | Term |
|---|---|
| D008591 | Meningomyelocele |
| ID | Term |
|---|---|
| D009436 | Neural Tube Defects |
| D009421 | Nervous System Malformations |
| D009422 | Nervous System Diseases |
| D000013 | Congenital Abnormalities |
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Semi-structured interviews with a psychologist |
| Up to 18 months |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |