Challenges of disorders of sex development: diverse perceptions across stakeholders.
Challenges of disorders of sex development: diverse perceptions across stakeholders.
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DOI：
10.1159/000339863
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发表时间：
2012
影响因子：
3.2
通讯作者：
Sandberg DE
中科院分区：
文献类型：
--
作者：
Kogan BA;Gardner M;Alpern AN;Cohen LM;Grimley MB;Quittner AL;Sandberg DE
性发育障碍（DSD）是染色体、性腺或解剖性发育不典型的先天性疾病。最佳的管理是以病人和家庭为中心，并由跨学科团队提供。目前的试点研究引起了重要利益相关者对影响年轻DSD患者及其家人的问题的关注。来自专家临床医生（儿科泌尿科医生[n=7]、儿科内分泌科医生[n=10]、精神卫生专业人员[n=4]）、DSD患者倡导者（n=4）以及对受DSD影响儿童（新生儿至6岁，n=11）父母的访谈的内容进行编码和内容分析，以确定与健康相关的生活质量问题。不同利益相关者群体的主要压力源各不相同。总的来说，以家庭为中心的问题比以儿童为中心的问题更受注意。在以儿童为中心的领域，提供者更担心身体功能；家人和倡导者强调性别问题和身体形象。在以家庭为中心的领域，父母对药物管理的关注超过了提供者的关注。与其他利益相关者相比，倡导者报告了更多关于沟通/信息的压力源。不同的利益相关者群体在影响幼儿/患有DSD的家庭的关键问题上存在差异。跨学科DSD保健团队的发展应考虑到咨询家庭和计划治疗时的不同观点。
Disorders of Sex Development (DSD) are congenital conditions in which chromosomal, gonadal, or anatomic sex development is atypical. Optimal management is patient- and family-centered and delivered by interdisciplinary teams. The present pilot study elicits concerns held by important stakeholders on issues affecting young patients with DSD and their families. Content from focus groups with expert clinicians (pediatric urologists [n=7], pediatric endocrinologists [n=10], mental health professionals [n=4]), DSD patient advocates (n=4), and interviews with parents of DSD-affected children (newborn to 6 yrs; n=11) was coded and content-analyzed to identify health-related quality of life issues. Key stressors varied across stakeholder groups. In general, family-centered issues were noted more than child-centered. In the child-centered domain, providers worried more about physical functioning; family and advocates emphasized gender concerns and body image. In the family-centered domain, parental concerns about medication management outweighed those of providers. Advocates reported more stressors regarding communication/information than other stakeholders. Variability exists across stakeholder groups in the key concerns affecting young children/families with DSD. Interdisciplinary DSD healthcare team development should account for varying perspectives when counseling families and planning treatment.
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影响因子：
4.2
作者：
MacKenzie, Drew;Huntington, Annette;Gilmour, Jean A.
通讯作者：
Gilmour, Jean A.
影响因子：
3.1
作者：
Marciel, Kristen K.;Saiman, Lisa;Quittell, Lynne M.;Dawkins, Kevin;Quittner, Alexandra L.
通讯作者：
Quittner, Alexandra L.
DOI：
10.1155/2010/692439
发表时间：
2010
期刊：
International journal of pediatric endocrinology
影响因子：
--
作者：
Schaeffer TL;Tryggestad JB;Mallappa A;Hanna AE;Krishnan S;Chernausek SD;Chalmers LJ;Reiner WG;Kropp BP;Wisniewski AB
通讯作者：
Wisniewski AB
影响因子：
5.6
作者：
Birbeck, GL;Hays, RD;Vickrey, BG
通讯作者：
Vickrey, BG
DOI：
10.1007/978-0-387-87687-0_23
发表时间：
2011-01-01
期刊：
BEHAVIORAL APPROACHES TO CHRONIC DISEASE IN ADOLESCENCE: A GUIDE TO INTEGRATIVE CARE
影响因子：
--
作者：
Quittner, Alexandra L.;Cruz, Ivette;Marciel, Kristen K.
通讯作者：
Marciel, Kristen K.