Defining successful outcomes and preferences for clinical management in differences/disorders of sex development: Protocol overview and a qualitative phenomenological study of stakeholders' perspectives

Affiliations

¹ Department of Pediatrics, University of Michigan Medical School, Division of Pediatric Psychology, Ann Arbor, USA; Child Health Evaluation & Research (CHEAR) Center, University of Michigan, Ann Arbor, USA.
² Department of Pediatrics, University of Michigan Medical School, Division of Pediatric Psychology, Ann Arbor, USA.
³ Department of Learning Health Sciences, University of Michigan Medical School, Ann Arbor, USA.
⁴ Child Health Evaluation & Research (CHEAR) Center, University of Michigan, Ann Arbor, USA.
⁵ Division of Endocrinology, Cincinnati Children's Hospital Medical Center, Cincinnati, USA; Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, USA; Accord Alliance, USA.
⁶ Division of Endocrinology, Cincinnati Children's Hospital Medical Center, Cincinnati, USA.
⁷ Ottawa Hospital Research Institute, University of Ottawa, Ottawa, Canada; School of Nursing, University of Ottawa, Ottawa, Canada.
⁸ Division of Pediatric Surgery, Phoenix Children's Hospital, Phoenix, USA; Accord Alliance, USA.
⁹ Department of Pediatrics, University of Michigan Medical School, Division of Pediatric Psychology, Ann Arbor, USA; Child Health Evaluation & Research (CHEAR) Center, University of Michigan, Ann Arbor, USA; Accord Alliance, USA. Electronic address: dsandber@med.umich.edu.

PMID: 34876378
PMCID: PMC8983568
DOI: 10.1016/j.jpurol.2021.10.020

Defining successful outcomes and preferences for clinical management in differences/disorders of sex development: Protocol overview and a qualitative phenomenological study of stakeholders' perspectives

Kristina I Suorsa-Johnson et al. J Pediatr Urol. 2022 Feb.

. 2022 Feb;18(1):36.e1-36.e17.

doi: 10.1016/j.jpurol.2021.10.020. Epub 2021 Oct 30.

Affiliations

¹ Department of Pediatrics, University of Michigan Medical School, Division of Pediatric Psychology, Ann Arbor, USA; Child Health Evaluation & Research (CHEAR) Center, University of Michigan, Ann Arbor, USA.
² Department of Pediatrics, University of Michigan Medical School, Division of Pediatric Psychology, Ann Arbor, USA.
³ Department of Learning Health Sciences, University of Michigan Medical School, Ann Arbor, USA.
⁴ Child Health Evaluation & Research (CHEAR) Center, University of Michigan, Ann Arbor, USA.
⁵ Division of Endocrinology, Cincinnati Children's Hospital Medical Center, Cincinnati, USA; Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, USA; Accord Alliance, USA.
⁶ Division of Endocrinology, Cincinnati Children's Hospital Medical Center, Cincinnati, USA.
⁷ Ottawa Hospital Research Institute, University of Ottawa, Ottawa, Canada; School of Nursing, University of Ottawa, Ottawa, Canada.
⁸ Division of Pediatric Surgery, Phoenix Children's Hospital, Phoenix, USA; Accord Alliance, USA.
⁹ Department of Pediatrics, University of Michigan Medical School, Division of Pediatric Psychology, Ann Arbor, USA; Child Health Evaluation & Research (CHEAR) Center, University of Michigan, Ann Arbor, USA; Accord Alliance, USA. Electronic address: dsandber@med.umich.edu.

PMID: 34876378
PMCID: PMC8983568
DOI: 10.1016/j.jpurol.2021.10.020

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.

Keywords: Differences of sex development; Disorders of sex development; Healthcare; Intersex; Outcomes; Shared decision making.

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Conflict of interest statement

Conflicts of interest None to declare.

Figures

**Summary Figure.**
Identified Themes. *Note*. DSD = difference of sex development

See this image and copyright information in PMC

References

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Defining successful outcomes and preferences for clinical management in differences/disorders of sex development: Protocol overview and a qualitative phenomenological study of stakeholders' perspectives

Affiliations

Defining successful outcomes and preferences for clinical management in differences/disorders of sex development: Protocol overview and a qualitative phenomenological study of stakeholders' perspectives

Authors

Affiliations

Abstract

Conflict of interest statement

Figures

References

Publication types

MeSH terms

Grants and funding

LinkOut - more resources

Full Text Sources