Dajie Zhang1, Walter E Kaufmann2, Jeff Sigafoos3, Katrin D Bartl-Pokorny1, Magdalena Krieber1, Peter B Marschik1,4,5, Christa Einspieler1. 1. Institute of Physiology, Research Unit iDN - interdisciplinary Developmental Neuroscience, Medical University of Graz, Austria. 2. Department of Neurology, Boston Children's Hospital & Harvard Medical School, Boston, USA. 3. School of Education, Victoria University of Wellington, New Zealand. 4. Center of Neurodevelopmental Disorders (KIND), Department of Women's and Children's Health, Karolinska Institutet, Stockholm, Sweden. 5. Brain, Ears & Eyes - Pattern Recognition Initiative, BioTechMed-Graz, Austria.
Abstract
BACKGROUND: Retrospective parental reports have often been used to identify the early characteristics of children later diagnosed with a developmental disorder. METHOD: We applied this methodology to document 13 parents' initial concerns about the development of their 17 children later diagnosed with fragile X syndrome (FXS). Parents were additionally asked about when they noticed the emergence of behavioural signs related to FXS. RESULTS: More than half of the parents reported initial concerns prior to the child's first birthday and in most cases it was deviant motor behaviours that caused the first concerns. Behavioural signs related to the FXS phenotype were also reported to be perceptible in the first year of the child's life. CONCLUSIONS: Due to limitations of retrospective parental questionnaires, we suggest that other methodologies, such as home video analysis, are needed to complement our understanding of the pathways of developmental disorders with late clinical onsets.
BACKGROUND: Retrospective parental reports have often been used to identify the early characteristics of children later diagnosed with a developmental disorder. METHOD: We applied this methodology to document 13 parents' initial concerns about the development of their 17 children later diagnosed with fragile X syndrome (FXS). Parents were additionally asked about when they noticed the emergence of behavioural signs related to FXS. RESULTS: More than half of the parents reported initial concerns prior to the child's first birthday and in most cases it was deviant motor behaviours that caused the first concerns. Behavioural signs related to the FXS phenotype were also reported to be perceptible in the first year of the child's life. CONCLUSIONS: Due to limitations of retrospective parental questionnaires, we suggest that other methodologies, such as home video analysis, are needed to complement our understanding of the pathways of developmental disorders with late clinical onsets.
Entities:
Keywords:
Infants; early signs; fragile X syndrome; parental concerns; parental questionnaire; recall bias
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