CompletedNot Applicable

Qualitative and Quantitative Study Which Aims to Determine the Specifics of the Announcement for the Diagnosis of Patients With Craniosynostosis and Their Parents to Better Support Them in Their Care

France574 participantsStarted 2014-10

Plain-language summary

The purposes of this study are: * to better understand the experience of the announcement for the diagnostic of craniosynostosis to patients and their families to improve the understanding of it and it modes of appropriation * to compare the announcement process concerning "simple" and "complex" forms. * to identify the intra-family issues at the announcement of a genetic mutation. * to reconstruct the care course of patients by analyzing the time of the announcement and the post-operative period.

Who can participate

SexALL

See this in plain English?

AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.

Inclusion Criteria : Group 1 : Parents of operated children with a clinical diagnosis of craniosynostosis Group 2 : * Parents of newly diagnosed children for a craniosynostosis who will be operated * Children aged 15 who were operated for a craniosynostosis at least 10 years ago Group 3 : * Parents of newly diagnosed children for a craniosynostosis who will be operated * Children aged 15 who were operated for a craniosynostosis at least 10 years ago Exclusion Criteria: * nothing to declare

What they're measuring

measure by questionnaire the conditions and experiences of the announcement concerning craniosynostosis (simple or complex)

Timeframe: 5 months

Trial details

NCT IDNCT02287805

SponsorAssistance Publique - Hôpitaux de Paris

Sponsor typeOTHER

Study typeOBSERVATIONAL

Primary completion2016-01

View on ClinicalTrials.gov More Craniosynostosis trials