The role of support groups, advocacy groups, and other interested parties in improving the care of patients with congenital adrenal hyperplasia: pleas and warnings.

International Journal of Pediatric Endocrinology
Peter A Lee, Christopher P Houk

Abstract

In the era of advocacy groups, it seems appropriate to contemplate how best to utilize them for patient benefit in the management of those with disorders of sex development (DSD), including those with congenital adrenal hyperplasia (CAH). Such interactions, to be constructive, require a spirit of cooperation to optimize outcomes. A traditional view of advocacy groups as a type of defender of patients' rights appears outdated and it is time that the benefits of their participation be fully realized. Open dialogue with all patients/families, including those who feel harmed by prior care are paramount. We discuss several recent examples of interactions that illustrate how dialogue in the name of "advocacy" can have a negative impact on developing a framework for ongoing constructive dialogue and actions. Such approaches completely change the dynamics of subsequent interactions. Physicians involved in the care of individuals with DSD, including those with CAH, and patients should be aware of confrontational techniques and legal implications that may be used by some advocacy groups. Hopefully recent efforts to promote a multidisciplinary care approach for patients with DSD/CAH will continue to foster mutual cooperation between team ...Continue Reading

References

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Aug 3, 2006·Pediatrics·Peter A LeeUNKNOWN International Consensus Conference on Intersex organized by the Lawson Wilkins Pediatric Endocrine Society and the European

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Citations

Mar 20, 2013·Journal of Pediatric and Adolescent Gynecology·Ani Amelia ZainuddinZaleha Abdullah Mahdy
Aug 4, 2012·Pediatric Clinics of North America·Rodrigo L P RomaoDiane K Wherrett
Dec 23, 2020·Problemy e̊ndokrinologii·Nikolay D ShiryaevVladimir V Sizonov

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