Decision-Making for Patients Born with Differences of Sex Development (DSD)

出生时性别发育差异 (DSD) 患者的决策

• 批准号: 10201685
• 负责人: DAVID Eric. SANDBERG
• 金额: $ 47.05万
• 依托单位: UNIVERSITY OF MICHIGAN AT ANN ARBOR
• 依托单位国家: 美国
• 财政年份: 2016
• 资助国家: 美国
• 起止时间: 2016-09-14 至 2023-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10201685
• 关键词: Adolescent; Adopted; Adult; Advocacy; Affect; Agreement; Anatomy; Anxiety; Appearance; Attitude; Benign; Birth; Caring; Characteristics; Child; Childhood; Chronic; Clinical Management; Communication; Communities; Consensus; Data; Decision Making; Development; Diagnostic; Disease; Education; Educational Curriculum; Elements; Emergency Situation; Emotional; Endocrine; European; Excision; Family; Focus Groups; Fright; Future; Gender; Genital; Genitalia; Genitourinary system; Goals; Gonadal structure; Health; Health Personnel; Hermaphroditism; Iatrogenesis; Institute of Medicine (U.S.); International; Intersex; Interview; Knowledge; Laws; Lead; Left; Life; Literature; Live Birth; Longevity; Medical; Methodology; Modeling; Molecular Diagnosis; Nomenclature; Operative Surgical Procedures; Outcome; Parents; Patient Care; Patient advocacy; Patient-Centered Care; Patient-Focused Outcomes; Patients; Persons; Practice Management; Privacy; Procedures; Process; Provider; Pseudohermaphroditism; Publishing; Quality of life; Recommendation; Research; Research Design; Risk; Sex Functioning; Sexual Development; Societies; Stigmatization; Techniques; Terminology; Therapeutic; Variant; base; clinical care; court; design; evidence base; experience; fertility preservation; genital surgery; health care delivery; health care quality; health related quality of life; multidisciplinary; patient advocacy group; preference; psychologic; psychological outcomes; resilience; sex; sex development disorder; shared decision making; social media; symposium

PROJECT SUMMARY Differences (or Disorders) of Sex Development (DSD) is a superordinate term encompassing congenital conditions in which chromosomal, gonadal, or anatomic sex development is atypical. Adopting an inclusive definition, between 1 in 200 to 1,000 people are born with some degree of atypical sex development. Clinical management of DSD is in a state of flux with disagreements within and between professional, advocacy, and patient communities regarding optimal care. Advances in molecular diagnosis and surgical techniques, findings regarding psychological outcomes in affected persons, and patient advocacy group engagement, led to a consensus conference attended by international experts in the DSD field and patient advocacy. Consensus recommendations included changes to diagnostic and clinical management strategies and in nomenclature that eliminated terms considered confusing and stigmatizing; e.g., “intersex,” “hermaphroditism,” “pseudohermaphroditism,” and “sex reversal.” While scientific and medical communities rapidly adopted the new nomenclature, vocal patient community elements strongly opposed the word “disorder” - experiencing it as unnecessary pathologization of atypical bodies that contributes to the perceived need for potentially harmful surgical “normalization” procedures. Some affected adults now prefer the term “intersex” - referring to an identity, rather than a medical condition. Further, little agreement exists across provider, advocacy, and patient communities regarding what constitutes optimal care for patients and families. Clinical management topics triggering contentious debate include decision- making over gender of rearing, genital surgery and its timing, gonad removal, and disclosing diagnostic details to patients. Evidence of these controversies exists in medical literature, social media, and courts of law, yet a remarkable lack of discussion, much less consensus, exists on how stakeholders value various outcomes. There has yet to be a study designed to systematically examine how patients, parents, healthcare providers, and other stakeholders differentially define and value optimal DSD health care delivery. The proposed study has the following aims: (1) Assess the importance ascribed by stakeholders to DSD clinical management options (i.e., identify what constitutes a “successful outcome”), both immediately and in the future; (2) Identify differential trade-off preferences (e.g., trade-offs between genital appearance, preserving fertility, sexual function, privacy, patient autonomy) and choice processes made by different stakeholder groups; (3) Design and pilot evidence-based curricula for stakeholders that clarify priorities, and integrate these with evidence to facilitate informed and shared decision-making. The proposed approach to understanding differential valuation of clinical management elements and developing data-driven curricula is potentially generalizable to other congenital or chronic conditions involving multidisciplinary care in which treatments are elective and dependent on patient/family values and preferences.

项目总结

项目成果

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

性别发育差异个体的手术决策：利益相关者的观点。

• DOI: 10.3389/fruro.2023.1092256
• 发表时间: 2023
• 期刊: Frontiers in urology
• 作者: Weidler,EricaM;Gardner,Melissa;Suorsa-Johnson,KristinaI;Schafer-Kalkhoff,Tara;Rutter,MeilanM;Sandberg,DavidE;vanLeeuwen,Kathleen
• 通讯作者: vanLeeuwen,Kathleen

Editorial: Shared Decision Making in Pediatric Differences/Disorders of Sex Development.

社论：儿科差异/性发育障碍的共同决策。

• DOI: 10.3389/fruro.2023.1281181
• 发表时间: 2023
• 期刊: Frontiers in urology
• 作者: Suorsa-Johnson,Kristina;Delaney,RebeccaK;Fagerlin,Angela;Sandberg,DavidE
• 通讯作者: Sandberg,DavidE

Differences/Disorders of Sex Development: Medical Conditions at the Intersection of Sex and Gender.

• DOI: 10.1146/annurev-clinpsy-081219-101412
• 发表时间: 2022-05-09
• 期刊: ANNUAL REVIEW OF CLINICAL PSYCHOLOGY
• 影响因子: 18.4
• 作者: Sandberg, David E.;Gardner, Melissa
• 通讯作者: Gardner, Melissa

A survey of healthcare professionals' perceptions of the decisional needs of parents with an infant born with a disorder/difference of sex development.

一项针对医疗保健专业人员对出生时患有性别发育障碍/差异的婴儿的父母的决策需求的看法的调查。

• DOI: 10.1016/j.jpurol.2022.09.015
• 发表时间: 2023
• 期刊: Journal of pediatric urology
• 影响因子: 2
• 作者: Suorsa-Johnson,KristinaI;Gardner,MelissaD;Brinkman,William;Carley,Meg;Gruppen,Larry;Liang,Noi;Lightfoot,Sophie;Pinkelman,Kendra;Speiser,PhyllisW;VanderBrink,Brian;Wisniewski,Jessica;Sandberg,DavidE;Stacey,Dawn
• 通讯作者: Stacey,Dawn

Co-creating a suite of patient decision aids for parents of an infant or young child with differences of sex development: A methods roadmap.

为具有性别发育差异的婴幼儿父母共同创建一套患者决策辅助工具：方法路线图。

• DOI: 10.3389/fruro.2022.1020152
• 发表时间: 2023
• 期刊: Frontiers in urology
• 作者: Lightfoot,Sophie;Carley,Meg;Brinkman,William;Gardner,MelissaD;Gruppen,LarryD;Liang,Noi;Pinkelman,Kendra;Speiser,PhyllisW;Suorsa-Johnson,KristinaI;VanderBrink,Brian;Wisniewski,Jessica;Sandberg,DavidE;Stacey,Dawn
• 通讯作者: Stacey,Dawn