Multidisciplinary care for individuals with disorders of sex development

Current Opinion in Obstetrics and Gynecology

Volumn 26, Issue 5, 2014, Pages 366-371

  Gomez Lobo, Veronica ^a  

^a GEORGETOWN UNIVERSITY   (United States)

Author keywords

Barriers to care; Disorders of sex development; Multidisciplinary care

Indexed keywords

BIOETHICIST; DISORDER OF SEX DEVELOPMENT; ENDOCRINOLOGIST; GENETICIST; GYNECOLOGIST; HEALTH CARE PERSONNEL; HUMAN; NEONATOLOGIST; NURSING; PATIENT CARE; PEDIATRIC SURGEON; PHYSICIAN; PRIORITY JOURNAL; PSYCHOLOGIST; REVIEW; SOCIAL WORKER; UROLOGIST; ADOLESCENT; CHILD; CHILD PSYCHIATRY; DIRECTIVE COUNSELING; DISORDERS OF SEX DEVELOPMENT; GENETIC COUNSELING; GYNECOLOGY; INTERDISCIPLINARY COMMUNICATION; PRACTICE GUIDELINE; PROFESSIONAL STANDARD; PSYCHOLOGY; SOCIAL WORK; TEACHER;

ADOLESCENT; CHILD; CHILD PSYCHIATRY; DIRECTIVE COUNSELING; DISORDERS OF SEX DEVELOPMENT; GENETIC COUNSELING; GYNECOLOGY; HUMANS; INTERDISCIPLINARY COMMUNICATION; MENTORS; PATIENT CARE TEAM; PATIENT-CENTERED CARE; PRACTICE GUIDELINES AS TOPIC; PROFESSIONAL ROLE; SOCIAL WORK, PSYCHIATRIC;

EID: 84925849279     PISSN: 1040872X     EISSN: 1473656X     Source Type: Journal    
DOI: 10.1097/GCO.0000000000000101     Document Type: Review

References (19)

1. Lee PA, Houk CP, Ahmed SF, Hughes IA; 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. International Consensus Conference on Intersex. Pediatrics 2006;118:e488-500. This is the seminal article regarding DSD. This consensus statement changed the nomenclature and called for multidisciplinary care.
2. Houk CP, Hughes LA, Ahmed SF, Lee PA; Writing Committee for the International Intersex Consensus Conference Participants. Summary of consensus statement on intersex disorders and their management. International Intersex Consensus Conference. Pediatrics 2006;118:753-757. As above
3. Parisi MA, Ramsdell LA, Burns MW, et al. A gender assessment team: experience with 250 patients over a period of 25 years. Genet Med 2007;9:348-357. This is the largest single-center series of multidisciplinary care for DSD.
4. http://www.accordalliance.org/. [Accessed 30 May 2014] This is website which provides one of the best resources for those forming a DSD team.
5. http://www.accordalliance.org/wp-content/uploads/2013/07/clinical.pdf This is the handbook published on-line by the Accord Alliance which is one of the best resources for those forming a multidisciplinary DSD team.
6. Moran ME, Karkazis K. Developing a multidisciplinary team for disorders of sex development: planning, implementation, and operation tools for care providers. Adv Urol 2012;2012: article ID 604135. An excellent resource regarding the steps for development of DSD teams.
7. Ozbaran B, Ozen S, Goksen D, et al. Psychiatric approaches for disorders of sex development: experience of a multidisciplinary team. J Clin Res Pediatr Endocrinol 2013;5:229-235. This is a report of psychological testing of 51 DSD patients.
8. Arboleda VA, Lee H, Sanchez FJ, et al. Targeted massively parallel sequencing provides comprehensive genetic diagnosis for patients with disorders of sex development. Clin Genet 2013;83:35-43. This article reviews new genetic studies for DSD diagnosis.
9. Ostrer H. Disorders of sex development (DSDs): an update. J Clin Endocrinol Metab 2014;99:1503-1509. Review of the literature identifies new genes involved in sex development.
10. Cohen-Kettenis PT. Gender change in 46, XY persons with 5a-reductase-2 deficiency and 17b-hydroxysteroid dehydrogenase-3 deficiency. Arch Sex Behav 2005;34:399-410.
11. Chowdhury TK, Chowdhury MZ, Mili F, et al. Gender identity shows a high correlation with Prader score in patients with disorders of sex development (DSD) presenting in mid childhood. Pediatr Surg Int 2014;30:527-532. Series from Bangladesh reveals that Prader score for genital anatomy correlates with gender identity.
12. Willihnganz-Lawson KH, Isharwal S, Lewis JM, Sarafoglou K, et al. Secondary vaginoplasty for disorders for sexual differentiation: is there a right time? Challenges with compliance and follow-up at a multidisciplinary center. J Pediatr Urol 2013;9:627-632. Case series of outcomes of vaginoplasty in DSD individuals.
13. Kos̈hler B, Kleinemeier E, Lux A, et al. Satisfaction with genital surgery and sexual life of adults with XY disorders of sex development: results from the German Clinical Evaluation Study. J Clin Endocrinol Metab 2012;97:577-588.
14. Creighton S, Chernausek SD, Romao R, et al. Timing and nature of reconstructive surgery for disorders of sex development-introduction. J Pediatr Urol 2012;8:602-610.
15. Moriya K, Morita K, Mitsui T, et al. Impact of laparoscopy for diagnosis and treatment in patients with disorders of sex development. J Pediatr Urol 2014. [Epub ahead of print]. doi: 10.1016/j.jpurol.2014.03.006. Case series demonstrating the diagnostic benefit of laparoscopy in DSD.
16. Cox K, Bryce J, Jiang J, et al. Novel associations in disorders of sex development: findings from the I-DSD Registry. J Clin Endocrinol Metab 2014;99:E348-E355. A recent review of the types of diagnosis encountered in International DSD Registry.
17. Sakakibara H, Yoshida H, Takei M, et al. Health management of adults with Turner syndrome: an attempt at multidisciplinary medical care by gynecologists in cooperation with specialists from other field. J Obstet Gynaecol Res 2011;37:836-842.
18. Kogan BA, Gardner M, Alpern AN, et al. Challenges of disorders of sex development: diverse perceptions across stakeholders. Horm Res Paediatr 2012;78:40-46.
19. Streuli JC, Vayena E, Cavicchia-Balmer Y, Huber J. Shaping parents: impact of contrasting professional counseling on parents' decision making for children with disorders of sex development. J Sex Med 2013;10:1953-1960. Study revealing that parents make different decisions regarding surgery for their children when counseled by a surgeon vs. a psychologist.