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"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.
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.
Purpose:
To define, benchmark, and publicize elements of quality care (i.e., "good practices") for pediatric patients with disorders/differences of sex development (DSD).
Methods:
Principles of quality care were identified by literature review; consensus exists for 11 good practices and adherence was evaluated through online survey of 21 North American clinical sites.
Results:
Strong uptake was observed for many practices, particularly specialty participation (n ≥ 17 of 21 sites for most core specialties); point of contact (n = 18); expertise in gender dysphoria/dissatisfaction (n = 20); and DSD-specific continuing medical education (n = 18). Greater variability was apparent for frequency of peer support referrals (n = 12 universally practiced); standardized questionnaires for routine assessment of psychosocial adaptation (n = 13) and gender development (n = 10); consistently clarifying patient/family values in decision-making (n = 15); genital exam protocols that exclude trainee education as primary reason (n = 15); and internal patient-tracking efforts (n = 5-10 of 20 sites).
Conclusion:
This study employed a novel approach to designate DSD good practices and identified areas of consistency and variation in these DSD clinical practices. Good practice benchmarking facilitates quality assessment within and across sites, promotes continuous improvement, and empowers stakeholders in locating and delivering high quality care.
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