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"Knowledge is Power": Parent Views on the Benefits of Early Diagnosis and Awareness of Sex Chromosome Multisomy Among Pediatric Professionals.

Kirsten A RigganBrianna GrossSharron CloseAbigail SteinbergMegan A Allyse
Published in: Journal of developmental and behavioral pediatrics : JDBP (2022)
This is the largest qualitative study to date examining parent and caregiver experiences with a pediatric diagnosis of SCMs. Increased knowledge and awareness of nonmedical SCM symptoms are needed among medical, education, occupational, and psychology professionals for early testing referral and improved support of children with SCMs.
Keyphrases
  • medical education
  • healthcare
  • primary care
  • young adults
  • mental health
  • copy number
  • gene expression
  • physical activity
  • depressive symptoms