Defining Successful Outcomes and Preferences for Clinical Management in Differences/disorders of Sex Development: Protocol Overview and a Qualitative Phenomenological Study of Stakeholders' Perspectives

Overview

Journal J Pediatr Urol

Publisher Elsevier

Specialties Pediatrics
Urology

Date 2021 Dec 8

PMID 34876378

Citations 7

Authors

Kristina I Suorsa-Johnson

Melissa D Gardner

Alison Baskin

Larry D Gruppen

Angela Rose

Meilan M Rutter

Tara Schafer-Kalkhoff

Dawn Stacey

Kathleen D van Leeuwen

Erica M Weidler

David E Sandberg

Affiliations

Soon will be listed here.

Abstract

Introduction: Utilizing a qualitative phenomenological design, the Defining Successful Outcomes and Trade-offs study examined stakeholder perspectives regarding optimal healthcare delivery and outcomes for individuals with a difference/disorder of sex development (DSD).

Objective: We describe study methods and provide an overview of themes and subthemes.

Study Design: Interviews were conducted with individuals with a DSD (n = 24), parents of those with a DSD (n = 19), healthcare providers (n = 37), and others (n = 30). Primary questions regarding clinical management of patients with DSD were: "What is a successful outcome?" and "How do you achieve it?"

Results: Themes included: understanding of DSD diagnosis and self-efficacy in management is necessary but complex; patient and family psychological well-being; support from others versus being stigmatized; affected person experiences physical health and accepts the implications of their condition; complexities in DSD decision making, roles and expectations; and knowledgeable providers and multidisciplinary teams are essential, notwithstanding persisting barriers. Participants recognized competing values potentially forcing trade-offs in decision making.

Discussion: Recognition of diverse and sometimes conflicting perspectives regarding optimal pathways of care and outcomes - both within and among those with DSD and their providers -promises to enhance shared decision making.

Conclusion: Diverse perspectives and perceptions of trade-offs associated with DSD healthcare emphasize the need to tailor care for patients and families.

Citing Articles

Differences of sex development and surgical decisions: focus group interviews with health care professionals in Norway.

Media L, Fauske L, Sigurdardottir S, Feragen K, Waehre A Health Psychol Behav Med. 2024; 12(1):2371134.

PMID: 38979393 PMC: 11229732. DOI: 10.1080/21642850.2024.2371134.

"I've had constant fears that I'll get cancer": the construction and experience of medical intervention on intersex bodies to reduce cancer risk.

Ussher J, Carpenter M, Power R, Ryan S, Allison K, Hart B Int J Qual Stud Health Well-being. 2024; 19(1):2356924.

PMID: 38796859 PMC: 11134048. DOI: 10.1080/17482631.2024.2356924.

Preferences in Clinical Care of Individuals With Differences of Sex Development.

Avancena A, Rose A, Gardner M, Rutter M, Schafer-Kalkhoff T, Suorsa-Johnson K Pediatrics. 2024; 153(6).

PMID: 38699802 PMC: 11153319. DOI: 10.1542/peds.2023-064207.

Surgical Decision-Making for Individuals with Differences of Sex Development: Stakeholders' views.

Weidler E, Gardner M, Suorsa-Johnson K, Schafer-Kalkhoff T, Rutter M, Sandberg D Front Urol. 2023; 3.

PMID: 37920724 PMC: 10621752. DOI: 10.3389/fruro.2023.1092256.

"It became easier once I knew": Stakeholder perspectives for educating children and teenagers about their difference of sex development.

Weidler E, Suorsa-Johnson K, Baskin A, Fagerlin A, Gardner M, Rutter M Patient Educ Couns. 2023; 113:107763.

PMID: 37087875 PMC: 10268945. DOI: 10.1016/j.pec.2023.107763.

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