Kristina I Suorsa-Johnson1, Melissa D Gardner1, Alison Baskin2, Larry D Gruppen3, Angela Rose4, Meilan M Rutter5, Tara Schafer-Kalkhoff6, Dawn Stacey7, Kathleen D van Leeuwen8, Erica M Weidler8, David E Sandberg9. 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.
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.
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.
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