Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2024 Jun 1;153(6):e2023064207.
doi: 10.1542/peds.2023-064207.

Preferences in Clinical Care of Individuals With Differences of Sex Development

Anton L V Avanceña  1   2 , Angela M Rose  3   4 , Melissa D Gardner  3   4 , Meilan M Rutter  5   6 , Tara Schafer-Kalkhoff  5 , Kristina I Suorsa-Johnson  7 , Kathleen D van Leeuwen  8 , Erica M Weidler  8   9 , Acham Gebremariam  3   4 , David E Sandberg #  3   4 , Lisa A Prosser #  3   4   10
Affiliations

Preferences in Clinical Care of Individuals With Differences of Sex Development

Anton L V Avanceña et al. Pediatrics. .

Abstract

Objectives: To identify the most important attributes related to the process of achieving, and outcomes associated with, successful care for differences of sex development (DSD).

Methods: We developed a best-worst scaling survey administered to 520 DSD stakeholders, including individuals or family members of those with DSD, health care specialists, and patient support and advocacy representatives. Fourteen process-related attributes and 16 outcome-related attributes were identified through qualitative research. We estimated relative importance scores and coefficients from regression analysis to understand the relative importance of attributes and conducted latent class analysis to explore heterogeneity in preferences.

Results: The 3 most important process attributes were (1) good communication between care team and patient/family, (2) care team educated patient/family about condition, and (3) care team incorporates the values of patient/family. The 3 most important outcome attributes were (1) patient satisfaction, (2) patient mental health, and (3) treatment maintains physical health. Latent class analyses showed that respondents had heterogeneous preferences. For process-related attributes, we identified 3 respondent groups: "Patient autonomy and support" (46% of respondents), "Education and care transitions" (18%), and "Shared decision-making" (36%). For outcome-related attributes, we identified 2 respondent groups: "Preserving function and appearance" (59% of respondents) and "Patient health and satisfaction" (41%).

Conclusions: Outcomes such as patient satisfaction and health were the most important outcome attributes, and good communication and education from the care team were the most important process attributes. Respondents expressed heterogeneous preferences for selected DSD care attributes that providers should consider to improve satisfaction with and quality of DSD care.

PubMed Disclaimer

Conflict of interest statement

CONFLICT OF INTEREST DISCLOSURES: The authors have indicated they have no potential conflicts of interest to disclose.

Figures

FIGURE 1
FIGURE 1
Sample best–worst scaling question. We used the term “Conditions Affecting Reproductive Development (CARD)” in the survey and other materials shared with participants because it is preferred over the term DSD by certain stakeholders. DSD, differences of sex development.
FIGURE 2
FIGURE 2
Importance scores for attributes related to DSD care. “Full sample” contains all 520 respondents. In “Complete responses only,” respondents who did not complete all four best-worst scaling questions for the process attributes (n = 51) and outcome attributes (n = 62) were excluded. In “Confident respondents only,” respondents who indicated that they were not confident (n = 40) or totally guessed (n = 2) their responses to the best–worst scaling questions, were excluded. DSD, differences of sex development.
FIGURE 3
FIGURE 3
Relative preferences for process- and outcome-related attributes of DSD care by respondent latent group. The respondent groups shown in this figure were identified through latent class analysis. Analyses using conditional logit models were conducted separately for process- (A) and outcome-related attributes (B) of DSD care. Relative preference weights were calculated by transforming coefficients from regression models into a ratio scale (Supplemental Information). DSD, differences of sex development.
See this image and copyright information in PMC

References

    1. Sandberg DE, Gardner M. Differences/disorders of sex development: medical conditions at the intersection of sex and gender. Annu Rev Clin Psychol. 2022;18(1):201–231 - PMC - PubMed
    1. Sandberg DE, Gardner M, Callens N, Mazur T, the DSD-TRN Psychosocial Workgroup. the DSD-TRN Advocacy Advisory Network, and Accord Alliance. Interdisciplinary care in disorders/differences of sex development (DSD): the psychosocial component of the DSD—Translational research network. Am J Med Genet C Semin Med Genet. 2017;175(2):279–292 - PMC - PubMed
    1. Chan YM, Hannema SE, Achermann JC, Hughes IA. Disorders of sex development. In: Melmed S, Richard J. Auchus, Allison B. Goldfine, Ronald J. Koenig, Clifford J. Rosen, eds. Williams Textbook of Endocrinology. 14th ed. Elsevier; 2019:867–936
    1. Słowikowska-Hilczer J, Hirschberg AL, Claahsen-van Der Grinten H, et al. . Fertility outcome and information on fertility issues in individuals with different forms of disorders of sex development: findings from the dsd-LIFE study. Fertil Steril. 2017;108(5):822–831 - PubMed
    1. Harris CJ, Corkum KS, Finlayson C, et al. . Establishing an institutional gonadal tissue cryopreservation protocol for patients with differences of sex development. J Urol. 2020;204(5):1054–1061 - PubMed

LinkOut - more resources