Qualitative Exploratory Study Among Reunionese Women and Their Partners Who Have a Child With Trisomy 21 (QUALI-21)

Centre Hospitalier Universitaire de la Réunion

Status: Enrolling

Conditions: Down Syndrome

Treatments: Behavioral: Interview

Study type: Observational

Funder types: Other

Identifiers

NCT04811534

2021/CHU/06

Details and patient eligibility

About

According to data from French congenital malformation registries, the prevalence of Down Syndrome (DS) in 2017 (live births and medical termination of pregnancy (MToP)) in Reunion Island was the lowest in France (23.04 per 10,000 births), notably in relation to a young maternal age. However, if we look at live births, Reunion Island has the highest prevalence of DS in France (12.24 vs. 5.81 per 10,000 births), despite a well organized prenatal diagnosis (PND). In fact, the use of MToP in this context is the lowest in France (10.8 vs 26.3 per 10 000 births).

Local specificities may have an impact on the choice of patients to undergo or not undergo a MToP in the context of PND of DS and explain why the rate of recourse to MToP is the lowest in France. To date, no qualitative study exploring the reasons why women and their partners do not undergo a MToP in the context of DS has been conducted in Reunion Island.

Thus, the main hypothesis is that the low recourse to MToP following PND of DS in Reunion Island could be explained by the beliefs, values or choices of Reunion Island women and their partners during pregnancy in relation to a specific family, socio-cultural and economic context.

Enrollment: 30 estimated patients

Sex: All

Ages: 18+ years old

Volunteers: Accepts Healthy Volunteers

Inclusion criteria

Parents:

• of a child born alive with Down Syndrome as of January 1, 2019 and registered within REMACOR
• living on the island of Reunion at the time of birth
• having a good understanding of French and/or Creole
• having given their written consent to the study

Exclusion criteria

Parents:

• with normal/negative prenatal screening (False positive)
• minors at the time of inclusion
• under guardianship or legal protection
• with a pathology preventing the interviews from taking place