Literature DB >> 21073122

Genital surgery for disorders of sex development: implementing a shared decision-making approach.

Katrina Karkazis1, Anne Tamar-Mattis, Alexander A Kon.   

Abstract

Ongoing controversy surrounds early genital surgery for children with disorders of sex development, making decisions about these procedures extraordinarily complex. Professional organizations have encouraged healthcare providers to adopt shared decision-making due to its broad potential to improve the decision-making process, perhaps most so when data are lacking, when there is no clear "best-choice" treatment, when decisions involve more than one choice, where each choice has both advantages and disadvantages, and where the ranking of options depends heavily on the decision-maker's values. We present a 6-step model for shared decision-making in decisions about genital surgery for disorders of sex development: (1) Set the stage and develop an appropriate team; (2) Establish preferences for information and roles in decision-making; (3) Perceive and address emotions; (4) Define concerns and values; (5) Identify options and present evidence; and (6) Share responsibility for making a decision. As long as controversy persists regarding surgery for DSD, an SDM process can facilitate the increased sharing of relevant information essential for making important health care decisions.

Entities:  

Mesh:

Year:  2010        PMID: 21073122     DOI: 10.1515/jpem.2010.129

Source DB:  PubMed          Journal:  J Pediatr Endocrinol Metab        ISSN: 0334-018X            Impact factor:   1.634


  18 in total

Review 1.  Disorders/differences of sex development (DSDs) for primary care: the approach to the infant with ambiguous genitalia.

Authors:  Justin A Indyk
Journal:  Transl Pediatr       Date:  2017-10

Review 2.  Disorders of Sex Development/Intersex: Gaps in Psychosocial Care for Children.

Authors:  Michelle M Ernst; Lih-Mei Liao; Arlene B Baratz; David E Sandberg
Journal:  Pediatrics       Date:  2018-08       Impact factor: 7.124

3.  Behavioral Health Diagnoses in Youth with Differences of Sex Development or Congenital Adrenal Hyperplasia Compared with Controls: A PEDSnet Study.

Authors:  Rachel Sewell; Cindy L Buchanan; Shanlee Davis; Dimitri A Christakis; Amanda Dempsey; Anna Furniss; Anne E Kazak; Anna J Kerlek; Brianna Magnusen; Nathan M Pajor; Laura Pyle; Louise C Pyle; Hanieh Razzaghi; Beth I Schwartz; Maria G Vogiatzi; Natalie J Nokoff
Journal:  J Pediatr       Date:  2021-08-27       Impact factor: 4.406

4.  Standards of Care for the Health of Transgender and Gender Diverse People, Version 8.

Authors:  E Coleman; A E Radix; W P Bouman; G R Brown; A L C de Vries; M B Deutsch; R Ettner; L Fraser; M Goodman; J Green; A B Hancock; T W Johnson; D H Karasic; G A Knudson; S F Leibowitz; H F L Meyer-Bahlburg; S J Monstrey; J Motmans; L Nahata; T O Nieder; S L Reisner; C Richards; L S Schechter; V Tangpricha; A C Tishelman; M A A Van Trotsenburg; S Winter; K Ducheny; N J Adams; T M Adrián; L R Allen; D Azul; H Bagga; K Başar; D S Bathory; J J Belinky; D R Berg; J U Berli; R O Bluebond-Langner; M-B Bouman; M L Bowers; P J Brassard; J Byrne; L Capitán; C J Cargill; J M Carswell; S C Chang; G Chelvakumar; T Corneil; K B Dalke; G De Cuypere; E de Vries; M Den Heijer; A H Devor; C Dhejne; A D'Marco; E K Edmiston; L Edwards-Leeper; R Ehrbar; D Ehrensaft; J Eisfeld; E Elaut; L Erickson-Schroth; J L Feldman; A D Fisher; M M Garcia; L Gijs; S E Green; B P Hall; T L D Hardy; M S Irwig; L A Jacobs; A C Janssen; K Johnson; D T Klink; B P C Kreukels; L E Kuper; E J Kvach; M A Malouf; R Massey; T Mazur; C McLachlan; S D Morrison; S W Mosser; P M Neira; U Nygren; J M Oates; J Obedin-Maliver; G Pagkalos; J Patton; N Phanuphak; K Rachlin; T Reed; G N Rider; J Ristori; S Robbins-Cherry; S A Roberts; K A Rodriguez-Wallberg; S M Rosenthal; K Sabir; J D Safer; A I Scheim; L J Seal; T J Sehoole; K Spencer; C St Amand; T D Steensma; J F Strang; G B Taylor; K Tilleman; G G T'Sjoen; L N Vala; N M Van Mello; J F Veale; J A Vencill; B Vincent; L M Wesp; M A West; J Arcelus
Journal:  Int J Transgend Health       Date:  2022-09-06

5.  "It was an overwhelming thing": parents' needs after infant diagnosis with congenital adrenal hyperplasia.

Authors:  Kyla L Boyse; Melissa Gardner; Donna J Marvicsin; David E Sandberg
Journal:  J Pediatr Nurs       Date:  2014-01-15       Impact factor: 2.145

6.  A shared decision-making tool for individuals living with complete androgen insensitivity syndrome.

Authors:  Erica M Weidler; Arlene Baratz; Miriam Muscarella; S Janett Hernandez; Kathleen van Leeuwen
Journal:  Semin Pediatr Surg       Date:  2019-09-19       Impact factor: 2.754

7.  UK guidance on the initial evaluation of an infant or an adolescent with a suspected disorder of sex development.

Authors:  S Faisal Ahmed; John C Achermann; Wiebke Arlt; Adam H Balen; Gerry Conway; Zoe L Edwards; Sue Elford; Ieuan A Hughes; Louise Izatt; Nils Krone; Harriet L Miles; Stuart O'Toole; Les Perry; Caroline Sanders; Margaret Simmonds; A Michael Wallace; Andrew Watt; Debbie Willis
Journal:  Clin Endocrinol (Oxf)       Date:  2011-07       Impact factor: 3.478

8.  Children with disorders of sex development: A qualitative study of early parental experience.

Authors:  Halley P Crissman; Lauren Warner; Melissa Gardner; Meagan Carr; Aileen Schast; Alexandra L Quittner; Barry Kogan; David E Sandberg
Journal:  Int J Pediatr Endocrinol       Date:  2011-10-12

9.  DSD and Professionalism from a Multilateral View: Supplementing the Consensus Statement on the Basis of a Qualitative Survey.

Authors:  Jürg C Streuli; Birgit Köhler; Knut Werner-Rosen; Christine Mitchell
Journal:  Adv Urol       Date:  2012-07-09

10.  Developing a multidisciplinary team for disorders of sex development: planning, implementation, and operation tools for care providers.

Authors:  Mary Elizabeth Moran; Katrina Karkazis
Journal:  Adv Urol       Date:  2012-06-25
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