Autism Spectrum Disorder, Neurodevelopmental Disorders, Siblings
Conditions
Keywords
Siblings, Screening, Autism Spectrum Disorder, Neurodevelopmental Disorders
Brief summary
In this study, a selective and multi-stages screening for neurodevelopmental disorders (NDD) in siblings of children with a confirmed ASD is done. The main aims are to estimate the prevalence of NDD among siblings and to evaluate the feasibility and acceptability of a standardized screening procedure.
Detailed description
Although NDD are frequent among siblings of children with ASD, their developmental screening is not yet sufficiently organized in routine practice. The needs and the characteristics of these siblings have yet to be better understood in order to define their developmental surveillance.
Interventions
DIAGNOSTIC_TESTStep 1 - Screening ; Step 2 - Clinical interview
Step 1: screening is performed by online parental questionnaires (SRS-2, Identidys scale, DCDQ, parental concerns questionnaire ) via a web platform. Parents and registered doctors will be informed by mail in case of negative screening; In case of positive screening, they will be called by phone in order to give them the results and to invite them for a clinical and semi-structured interview. Step 2: The semi-structured interview will be performed by a psychologist specialized in NDD in order to clinically confirm the results of the screening and refer the child to care and interventions, by mail to the registered doctor. Around 12 months after this interview, parents will be called by phone to collect a description of the referral and their satisfaction about the screening process.
Sponsors
Direction Générale de l'Offre de Soins
University Hospital, Montpellier
Study design
Observational model
COHORT
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
2 Years to 16 Years
Healthy volunteers
No
Inclusion criteria
* Step 1: Brothers or sisters (including stepsisters and brothers); aged between 2 and 16 years; living in Occitanie; informed and express consent of parents ; affiliated to social security. * Step 2: step 1 positive screening or parental concerns for child's development ; parental signed informed consent.
Exclusion criteria
* Parents (or child) refusal to participate; adopted brother or sister. Do not speak French
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Percentage of family participation | 12 months | Families' participation rate and, among participants, number of children with a NDD diagnosis at the end of the screening study. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Sensibility, specificity, positive predictive values (PPV) and negative predictive values (NPV) of the screening procedure | 12 months | — |
| Percentage of satisfied parents | 12 months | Estimate the level of satisfaction of parents who participated in the screening with the parental satisfaction score via the Visual Analog Scale (VAS). VAS is a scale from 0 (not at all satisfied) to 100 (very satisfied) |
Countries
France
Contacts
Primary ContactCécile MICHELON
Backup ContactCharlotte GERBE
Outcome results
None listed