Abstract
Background
Pervasive developmental disorders (PDDs) can be very difficult to diagnose in children and to communicate such a diagnosis to their parents. Families of children with PDD learn of their child’s diagnosis long after the first symptoms are noted in the child’s behavior.
Methods
An area-based survey was conducted to assess all social and health care providers taking care of patients with PDDs in the Veneto Region (North-East Italy).
Results
Only 28% of health care providers arrived at a definite diagnosis when the child was in his/her first year of age, 51% when the child was 2–3 years old and 21% from age of 4 years and up. On average, the latency between the time of the diagnosis and its communication to the family was 6.9 months. However, a number of families did not ever have a diagnosis communicated to them. Sometimes, 68% of the providers did not communicate a PDDs diagnosis to patient’s families, and 4% of them quite commonly.
Conclusion
The well-known delay in making a diagnosis of PDDs has two distinct components: one relating to the difficulty of confirming a diagnosis of PDDs, the other, hitherto unrecognized, relating to the family being notified.
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References
World Health Organization. The International Classification of Diseases, 10th Revision. Geneva: WHO, 1994.
American Psychiatric Association. Diagnostic and statistical manual of mental disorders, 4th ed. Washington DC: APA, 1994.
Levy SE, Mandell DS, Schultz RT. Autism. Lancet 2009;374:1627–1638.
Mises R, Quemada N, Botbol M, Burzsteijn C, Garrabe J, Golse B, et al. French classification for child and adolescent mental disorders. Psychopathology 2002;35:176–180.
Zero to Three/National Centre for Clinical Infant Programs. Diagnostic classification 0–3, Diagnostic classification of mental health and developmental disorders of infancy and early childhood, 2nd ed. Washington DC: ZtT NC, 1994.
Barbaro J, Dissanayake C. Autism spectrum disorders in infancy and toddlerhood: a review of the evidence on early signs, early identification tools, and early diagnosis. J Dev Behav Pediatr 2009;30:447–459.
Wiggins LD, Baio J, Rice C. Examination of the time between first evaluation and first autism spectrum diagnosis in a population-based sample. J Dev Behav Pediatr 2006;27:S79–S87.
De Giacomo A, Fombonne E. Parental recognition of developmental abnormalities in autism. Eur Child Adolesc Psychiatry 1998;7:131–136.
Howlin P, Asgharian A. The diagnosis of autism and Asperger syndrome: findings from a survey of 770 families. Dev Med Child Neurol 1999;41:834–839.
Rhoades RA, Scarpa A, Salley B. The importance of physician knowledge of autism spectrum disorder: results a parent survey. BMC Pediatr 2007;7:37.
Gupta VB, Hyman SL, Plauché Johnson C, Bryant J, Byers B, Kallen R, et al. Identifying children with Autism early? Pediatrics 2007;119:152–153.
Johnson CP, Myers SM; American Academy of Pediatrics Council on Children With Disabilities. Identification and evaluation of children with autism spectrum disorders. Pediatrics 2007;120:1183–1215.
Harrington JW, Patrick PA, Edwards KS, Brand DA. Parental beliefs about autism: implications for the treating physician. Autism 2006;10:452–462.
Osborne LA, Reed P. Parents’ perceptions of communication with professionals during the diagnosis of autism. Autism 2008;12:309–324.
Starke M. Parents’ needs for knowledge concerning the medical diagnosis of their children. J Child Health Care 2002;6:245–257.
Goin-Kochel RP, Mackintosh VH, Myers BJ. How many doctors does it take to make an autism spectrum diagnosis? Autism 2006;10:439–451.
Baron-Cohen S, Scahill VL, Izaguirre J, Hornsey H, Robertson MM. The prevalence of Gilles de la Tourette syndrome in children and adolescents with autism: a large scale study. Psychol Med 1999;29:1151–1159.
Noterdaeme M, Hutzelmeyer-Nickels A. Early symptoms and recognition of pervasive developmental disorders in Germany. Autism 2010;14:575–588.
Keen D, Couzens D, Muspratt S, Rodger S. The effects of a parent-focused intervention for children with a recent diagnosis of autism spectrum disorder on parenting stress and competence. Research in Autism Spectrum Disorders 2010;4:229–241.
Stuart M, McGrew JH. Caregiver burden after receiving a diagnosis of an autism spectrum disorder. Res Autism Spect Dis 2009;3:86–97.
Shattuck PT, Durkin M, Maenner M, Newschaffer C, Mandell DS, Wiggins L, et al. Timing of identification among children with an autism spectrum disorder: findings from a populationbased surveillance study. J Am Acad Child Adolesc Psychiatry 2009;48:474–483.
Nissenbaum MS, Tollefson N, Reese M. The interpretative conference: sharing a diagnosis of autism with families. Focus 2002;17:30–43.
Ptacek JT, Eberhardt TL. Breaking bad news. A review of the literature. JAMA 1996;276:496–502.
Fallowfield L, Jenkins V. Communicating sad, bad, and difficult news in medicine. Lancet 2004;363:312–319.
Mitchell AJ. Reluctance to disclose difficult diagnoses: a narrative review comparing communication by psychiatrists and oncologists. Support Care Cancer 2007;15:819–828.
Bartolo PA. Communicating a diagnosis of developmental disability to parents: multiprofessional negotiation frameworks. Child Care Health Dev 2002;28:65–71.
Baird G, McConachie H, Scrutton D. Parents’ perceptions of disclosure of the diagnosis of cerebral palsy. Arch Dis Child 2000;83:475–480.
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Manea, S., Dalla Pozza, L.V., Mazzucato, M. et al. Diagnosis of pervasive developmental disorders: when and how? An area-based study about health care providers. World J Pediatr 11, 48–53 (2015). https://doi.org/10.1007/s12519-014-0533-6
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DOI: https://doi.org/10.1007/s12519-014-0533-6