Display options
Cite
Tartaglia N, Howell S, Wilson R, et al. The eXtraordinarY Kids Clinic: an interdisciplinary model of care for children and adolescents with sex chromosome aneuploidy. J Multidiscip Healthc. 2015;8:323-34doi: 10.2147/JMDH.S80242.
Tartaglia, N., Howell, S., Wilson, R., Janusz, J., Boada, R., Martin, S., Frazier, J. B., Pfeiffer, M., Regan, K., McSwegin, S., & Zeitler, P. (2015). The eXtraordinarY Kids Clinic: an interdisciplinary model of care for children and adolescents with sex chromosome aneuploidy. Journal of multidisciplinary healthcare, 8323-34. https://doi.org/10.2147/JMDH.S80242
Tartaglia, Nicole, et al. "The eXtraordinarY Kids Clinic: an interdisciplinary model of care for children and adolescents with sex chromosome aneuploidy." Journal of multidisciplinary healthcare vol. 8 (2015): 323-34. doi: https://doi.org/10.2147/JMDH.S80242
Tartaglia N, Howell S, Wilson R, Janusz J, Boada R, Martin S, Frazier JB, Pfeiffer M, Regan K, McSwegin S, Zeitler P. The eXtraordinarY Kids Clinic: an interdisciplinary model of care for children and adolescents with sex chromosome aneuploidy. J Multidiscip Healthc. 2015 Jul 17;8:323-34. doi: 10.2147/JMDH.S80242. eCollection 2015. PMID: 26229481; PMCID: PMC4514383.
Copy Download .nbib Format: NLM
Share it on

J Multidiscip Healthc. 2015 Jul 17;8:323-34. doi: 10.2147/JMDH.S80242. eCollection 2015.

The eXtraordinarY Kids Clinic: an interdisciplinary model of care for children and adolescents with sex chromosome aneuploidy.

Journal of multidisciplinary healthcare

Nicole Tartaglia, Susan Howell, Rebecca Wilson, Jennifer Janusz, Richard Boada, Sydney Martin, Jacqueline B Frazier, Michelle Pfeiffer, Karen Regan, Sarah McSwegin, Philip Zeitler

Affiliations

  1. Department of Pediatrics, University of Colorado School of Medicine, Aurora, CO, USA ; Child Development Unit, Children's Hospital Colorado, Aurora, CO, USA.
  2. Child Development Unit, Children's Hospital Colorado, Aurora, CO, USA.

PMID: 26229481 PMCID: PMC4514383 DOI: 10.2147/JMDH.S80242

Abstract

PURPOSE: Individuals with sex chromosome aneuploidies (SCAs) are born with an atypical number of X and/or Y chromosomes, and present with a range of medical, developmental, educational, behavioral, and psychological concerns. Rates of SCA diagnoses in infants and children are increasing, and there is a need for specialized interdisciplinary care to address associated risks. The eXtraordinarY Kids Clinic was established to provide comprehensive and experienced care for children and adolescents with SCA, with an interdisciplinary team composed of developmental-behavioral pediatrics, endocrinology, genetic counseling, child psychology, pediatric neuropsychology, speech-language pathology, occupational therapy, nursing, and social work. The clinic model includes an interdisciplinary approach to care, where assessment results by each discipline are integrated to develop unified diagnostic impressions and treatment plans individualized for each patient. Additional objectives of the eXtraordinarY Kids Clinic program include prenatal genetic counseling, research, education, family support, and advocacy.

METHODS: Satisfaction surveys were distributed to 496 patients, and responses were received from 168 unique patients.

RESULTS: Satisfaction with the overall clinic visit was ranked as "very satisfied" in 85%, and as "satisfied" in another 9.8%. Results further demonstrate specific benefits from the clinic experience, the importance of a knowledgeable clinic coordinator, and support the need for similar clinics across the country. Three case examples of the interdisciplinary approach to assessment and treatment are included.

Keywords: Klinefelter syndrome; Turner syndrome; XXX; XXXXY; XXXY; XXY; XXYY; XYY; pentasomy X; prenatal diagnosis; tetrasomy X; trisomy X

References

  1. J Pediatr. 2013 Oct;163(4):1085-94 - PubMed
  2. Eur J Hum Genet. 2010 Mar;18(3):265-71 - PubMed
  3. Genet Couns. 2003;14(3):267-79 - PubMed
  4. J Genet Couns. 2015 Feb;24(1):88-103 - PubMed
  5. Prog Clin Biol Res. 1985;200:301-9 - PubMed
  6. Child Dev. 1982 Oct;53(5):1182-92 - PubMed
  7. Acta Paediatr. 2011 Jun;100(6):851-60 - PubMed
  8. Prenat Diagn. 2013 Jun;33(6):591-7 - PubMed
  9. Am J Med Genet A. 2008 Jun 15;146A(12):1509-22 - PubMed
  10. J Clin Endocrinol Metab. 2007 Jan;92(1):10-25 - PubMed
  11. Pediatrics. 2009 May;123(5):e865-70 - PubMed
  12. Clin Genet. 1988 Apr;33(4):262-9 - PubMed
  13. Am J Med Genet. 1993 Mar 15;45(6):761-3 - PubMed
  14. Obstet Gynecol. 1983 Sep;62(3 Suppl):70s-73s - PubMed
  15. Lancet. 2004 Jul 17-23;364(9430):273-83 - PubMed
  16. Arch Dis Child. 2011 Oct;96(10):954-9 - PubMed
  17. Orphanet J Rare Dis. 2010 May 11;5:8 - PubMed
  18. Pediatr Endocrinol Rev. 2010 Dec;8 Suppl 1:145-50 - PubMed
  19. Prenat Diagn. 2012 Dec;32(13):1233-41 - PubMed
  20. Pediatrics. 1995 Oct;96(4 Pt 1):672-82 - PubMed
  21. Am J Med Genet A. 2010 Jun;152A(6):1523-30 - PubMed
  22. Diabetes Care. 2006 Jul;29(7):1591-8 - PubMed
  23. Genet Med. 2003 Nov-Dec;5(6):460-8 - PubMed
  24. J Clin Endocrinol Metab. 2004 Aug;89(8):3830-4 - PubMed
  25. Clin Pediatr (Phila). 2001 Dec;40(12):639-51 - PubMed
  26. Oral Surg Oral Med Oral Pathol Oral Radiol Endod. 2008 May;105(5):670-7 - PubMed
  27. Clin Genet. 1981 Apr;19(4):275-80 - PubMed
  28. J Dev Behav Pediatr. 2012 May;33(4):309-18 - PubMed
  29. Pediatrics. 1987 Aug;80(2):240-4 - PubMed
  30. Nat Clin Pract Urol. 2007 Apr;4(4):192-204 - PubMed
  31. Neurofibromatosis. 1988;1(3):179-81 - PubMed
  32. Pediatr Ann. 2009 Aug;38(8):456-63 - PubMed
  33. Dev Med Child Neurol. 2010 Feb;52(2):119-29 - PubMed
  34. Pediatrics. 2012 Apr;129(4):769-78 - PubMed
  35. Handb Clin Neurol. 2013;111:273-9 - PubMed
  36. Acta Neurol Scand. 1978 Jul;58(1):66-73 - PubMed
  37. Hum Reprod Update. 2006 Jan-Feb;12(1):39-48 - PubMed
  38. J Psychiatr Res. 2012 Oct;46(10):1300-6 - PubMed

Publication Types

Grant support