title: Partnering with parents to disclose Klinefelter syndrome to their child.
abstract: In paediatrics, a diagnosis of Klinefelter syndrome can occur after prenatal testing or because of symptoms such as learning difficulties or incomplete puberty. After the diagnosis, parents have to decide when and how to speak about this condition to their child. Parents and healthcare professionals (HCPs) may have different perceptions related to disclosure of this diagnosis. Due to the absence of clear guidelines, parents and HCPs may feel uncomfortable discussing the condition and may hide the truth in a prolonged fashion.
  
  
  CONCLUSIONS
  For patients with a prenatal diagnosis, we recommend a gradual and personalised disclosure process starting between the ages of 5 and 13 years. For older patients, a personalised approach should also be the goal. Various communication strategies and recommendations regarding disclosure of Klinefelter syndrome are proposed.
authors.affiliation: Department of Psychology, Sainte-Justine Hospital, Quebec, Canada.|Research Center, Sainte-Justine Hospital, Quebec, Canada.
authors.forename: Isabelle
authors.initials: I
authors.lastname: Tremblay
authors.affiliation: Research Center, Sainte-Justine Hospital, Quebec, Canada.|Endocrinology Service, Sainte-Justine Hospital, Quebec, Canada.
authors.forename: Guy
authors.initials: G
authors.lastname: Van Vliet
authors.affiliation: Research Center, Sainte-Justine Hospital, Quebec, Canada.|Department of Pediatrics, University of Montreal, Quebec, Canada.
authors.forename: Monique
authors.initials: M
authors.lastname: Gonthier
authors.affiliation: Research Center, Sainte-Justine Hospital, Quebec, Canada.|Department of Pediatrics, University of Montreal, Quebec, Canada.|Bureau de l'Éthique Clinique, University of Montreal, Quebec, Canada.
authors.forename: Annie
authors.initials: A
authors.lastname: Janvier
mesh_terms: D000293:Adolescent; D000367:Age Factors; D001291:Attitude of Health Personnel; D002648:Child; D002675:Child, Preschool; D005260:Female; D006801:Humans; D007713:Klinefelter Syndrome / Q000175:diagnosis / Q000523:psychology*; D008297:Male; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology*; D011247:Pregnancy; D011296:Prenatal Diagnosis; D011368:Professional-Family Relations / Q000941:ethics; D011369:Professional-Patient Relations / Q000941:ethics; D014342:Truth Disclosure / Q000941:ethics
keywords: Disclosure; Family-centred care; Klinefelter syndrome; Parental perspectives; Sex chromosome aneuploidies; Truth telling; XXY syndrome