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

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Abstract

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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Data availability

Aggregate and site-specific data (where consent was obtained from site) is/will be available on the website of Accord Alliance (accordalliance.org).

Notes

  1. We acknowledge that some object to the term Disorders of Sex Development as stigmatizing. Others advocate for the term intersex or prefer to use a specific diagnosis rather than a superordinate encompassing diverse conditions, e.g., Differences or Disorders of Sex Development. We adopt the acronym DSD, defined in Lee et al. [1] which does not carry implications for the person’s identity.

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Acknowledgements

We sincerely thank all respondents for their participation in this survey.

in collaboration with Accord Alliance

Erica M. Weidler2, Kathleen van Leeuwen2

Funding

This research was supported, in part, through a grant from the Eunice Kennedy Shriver National Institute of Child Health and Human Development under award number R01 HD093450

Author information

Authors and Affiliations

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

    Grace L. Kavanaugh & Janey Youngblom

  2. Accord Alliance, Higley, AZ, USA

    Grace L. Kavanaugh, Joshua G. Kellison, David E. Sandberg, Erica M. Weidler & Kathleen van Leeuwen

  3. Fetal Diagnostic and Treatment Center and Differences of Sex Development Clinic, University of Michigan, Ann Arbor, MI, USA

    Lauren Mohnach

  4. Sexual Orientation and Gender Institute of Arizona, Mesa, AZ, USA

    Joshua G. Kellison

  5. Department of Pediatrics, Susan B. Meister Child Health Evaluation and Research Center, University of Michigan, Ann Arbor, MI, USA

    David E. Sandberg

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  1. Grace L. Kavanaugh
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  3. Janey Youngblom
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Consortia

in collaboration with Accord Alliance

  • Erica M. Weidler
  •  & Kathleen van Leeuwen

Contributions

GLK—methodology, investigation, formal analysis, writing-original draft, visualization. LM—conceptualization, methodology, writing-review and editing, supervision. JY—conceptualization, methodology, writing-review and editing, supervision. JGK—conceptualization, writing-review and editing. DES—conceptualization, methodology, writing-original draft, visualization, supervision. Accord Alliance—conceptualization, methodology, writing-review, and editing

Corresponding author

Correspondence to David E. Sandberg.

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Conflict of interest

The authors declare no competing interests.

Ethics approval

This study was reviewed by the Institutional Review Board at California State University, Stanislaus (#1920-061) and categorized as “Exempt” from the policy for protection of human research subjects.

Consent to participate

Before starting the survey, participants gave their consent for publication of their answers, either under their site name or a pseudonym.

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Member of in collaboration with Accord Alliance is listed below Acknowledgements.

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Kavanaugh, G.L., Mohnach, L., Youngblom, J. et al. “Good practices” in pediatric clinical care for disorders/differences of sex development. Endocrine 73, 723–733 (2021). https://doi.org/10.1007/s12020-021-02748-4

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