Karkazis K, Tamar-Mattis A, Kon AA.. J Pediatr Endorinol Metab. 2010;23:789-806
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.
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Summary
This article articulates a process for shared decision-making in genital surgery for newborns or young children with disorders of sex development (DSD). The recommendations can be used by nascent and established interdisciplinary DSD teams as a stimulus for program evaluation and improvement.
Optimal management of DSD is challenged by gaps in our knowledge of molecular mechanisms, uncertainties regarding the effects of early performed surgery on body image and erotic sensitivity of genital tissue, and experts’ and former patients’ observations that past practices have resulted in negative surgical and psychological outcomes. The authors make the case that shared decision-making is most strongly needed 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”. These features often characterize the situation in the management of DSD. The authors outline a six-step model for shared decision-making in DSD care: (1) setting the stage and developing an appropriate team; (2) establishing preferences for information and roles in decision-making; (3) perceiving and addressing emotions; (4) defining concerns and values; (5) identifying options and presenting evidence; and (6) sharing responsibility for making a decision.
Many of this article’s suggestions are implied or specifically recommended by the consensus statement on DSD {1}. The history of DSD management highlights, perhaps more so than other complex pediatric conditions, the influence of (untested) beliefs and assumptions on the delivery of care. Because the outcomes are uncertain, perhaps the only deliverable we can promise to patients and families is a decision-making ‘process’ that is informed by (imperfect) evidence, provides balanced information, and is patient- and family-centered.
References:
1. Consensus statement on management of intersex disorders. International Consensus Conference on Intersex. 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 Pediatrics 2006 Aug; 2(118):e488-500
PMID: 16882788
Disclosures
David E Sandberg has commented on early drafts of the article but has not had any involvement with the final version.
Recommendation Citation:
Sandberg D: F1000Prime Recommendation of [Karkazis K et al., J Pediatr Endocrinol Metab 2010, 23:789-806]. In F1000Prime, 09 Sep 2010; DOI: 10.3410/f.5019957.4952055. F1000Prime.com/5019957#eval4952055