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Assessing Health-Related Quality of Life in Disorders of Sex Development: Phase I – Item Generation

  • David E. SandbergEmail author
  • Melissa D. Gardner
  • Barry A. Kogan
  • Mary Beth Grimley
  • Laura Cohen
  • Adrianne N. Alpern
  • Alexandra L. Quittner
Conference paper
Part of the Advances in Experimental Medicine and Biology book series (AEMB, volume 707)

Abstract

Disorders of sex development (DSD) are congenital conditions in which chromosomal, gonadal, or anatomic sex development is atypical [1]. Only anecdotal, retrospective reports exist regarding the experiences of children with DSD and their families, with no concurrently collected data on the specific stressors children and families face or on their processes of adaptation.

Notes

Acknowledgment

This work was supported by NICHD awards R21HD044398 and R01HD053637.

References

  1. 1.
    Lee PA, Houk CP, Ahmed SF, Hughes IA, in collaboration with the participants in the International Consensus Conference on Intersex organized by the Lawson Wilkins Pediatric Endocrine Society and the European Society for Paediatric Endocrinology. Consensus statement on management of intersex disorders. Pediatrics. 2006; 118: e488–e500.PubMedCrossRefGoogle Scholar
  2. 2.
    Sudman S, Bradburn NM, Schwarz N. Thinking about answers: The application of cognitive processes to survey methodology. San Francisco, CA: Jossey-Bass; 1996.Google Scholar
  3. 3.
    Schwarz N, Sudman S. Answering questions: Methodology for determining cognitive and communicative processes in survey research. San Francisco, CA: Jossey-Bass; 1996.Google Scholar

Copyright information

© Springer Science+Business Media, LLC 2011

Authors and Affiliations

  • David E. Sandberg
    • 1
    Email author
  • Melissa D. Gardner
    • 2
  • Barry A. Kogan
    • 3
  • Mary Beth Grimley
    • 4
  • Laura Cohen
    • 4
  • Adrianne N. Alpern
    • 4
  • Alexandra L. Quittner
    • 4
  1. 1.Division of Child and Behavioral Health, Department of Pediatrics & Communicable DiseasesUniversity of MichiganAnn ArborUSA
  2. 2.University of MichiganAnn ArborUSA
  3. 3.Albany Medical CollegeAlbanyUSA
  4. 4.University of MiamiMiamiUSA

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