"Good practices" in pediatric clinical care for disorders/differences of sex development

Grace L Kavanaugh1,2, Lauren Mohnach3, Janey Youngblom1

  • 1Department of Biology, California State University, Stanislaus, CA, USA.

Endocrine
|May 22, 2021
PubMed

Insights

This study defined quality care practices for pediatric patients with disorders/differences of sex development (DSD). While many sites adopted core practices, variability exists in areas like psychosocial support and patient tracking.

Area of Science:

  • Pediatric Endocrinology
  • Genetics
  • Medical Ethics

Background:

  • Disorders/Differences of Sex Development (DSD) require specialized, multidisciplinary care.
  • Establishing standardized quality care benchmarks is crucial for improving patient outcomes.
  • Previous efforts to define "good practices" for DSD care have been limited.

Purpose of the Study:

  • To define, benchmark, and publicize elements of quality care for pediatric patients with DSD.
  • To establish consensus on "good practices" for DSD management.
  • To evaluate adherence to these practices across North American clinical sites.

Main Methods:

  • A comprehensive literature review was conducted to identify principles of quality care.
  • Consensus was reached on 11 "good practices" for DSD care.
  • An online survey of 21 North American clinical sites assessed adherence to these practices.

Main Results:

  • High adoption rates were observed for specialty participation, dedicated points of contact, expertise in gender dysphoria, and DSD-specific continuing medical education.
  • Significant variability was noted in the frequency of peer support referrals, use of standardized psychosocial and gender development questionnaires, consistent clarification of patient values, genital exam protocols, and internal patient-tracking systems.
  • While core components show strong uptake, nuanced aspects of care require further attention and standardization.

Conclusions:

  • This study presents a novel approach to designating DSD "good practices" and highlights areas of consistency and variation in clinical implementation.
  • Benchmarking DSD care facilitates quality assessment, promotes continuous improvement, and empowers stakeholders in delivering high-quality care.
  • Further efforts are needed to address variability and ensure comprehensive, patient-centered care for individuals with DSD.
Abstract

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