BACKGROUND/AIMS: 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. METHODS: 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 years; n = 11) was coded and content-analyzed to identify health-related quality of life issues. RESULTS: 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. CONCLUSION: 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.
BACKGROUND/AIMS: 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. METHODS: Content from focus groups with expert clinicians (pediatric urologists (n = 7), pediatric endocrinologists (n = 10), mental health professionals (n = 4), DSDpatient advocates (n = 4), and interviews with parents of DSD-affected children (newborn to 6 years; n = 11) was coded and content-analyzed to identify health-related quality of life issues. RESULTS: 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. CONCLUSION: 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.
Authors: Tonya M Palermo; Anna C Long; Amy S Lewandowski; Dennis Drotar; Alexandra L Quittner; Lynn S Walker Journal: J Pediatr Psychol Date: 2008-04-22
Authors: Richard J Auchus; Selma Feldman Witchel; Kelly R Leight; Javier Aisenberg; Ricardo Azziz; Tânia A Bachega; Linda A Baker; Arlene B Baratz; Laurence S Baskin; Sheri A Berenbaum; David T Breault; Barbara I Cerame; Gerard S Conway; Erica A Eugster; Stephanie Fracassa; John P Gearhart; Mitchell E Geffner; Katharine B Harris; Richard S Hurwitz; Aviva L Katz; Brinda N Kalro; Peter A Lee; Gretchen Alger Lin; Karen J Loechner; Ian Marshall; Deborah P Merke; Claude J Migeon; Walter L Miller; Tamara L Nenadovich; Sharon E Oberfield; Kenneth A Pass; Dix P Poppas; Michele A Lloyd-Puryear; Charmian A Quigley; Felix G Riepe; Richard C Rink; Scott A Rivkees; David E Sandberg; Traci L Schaeffer; Richard N Schlussel; Francis X Schneck; Ellen W Seely; Diane Snyder; Phyllis W Speiser; Bradford L Therrell; Carol Vanryzin; Maria G Vogiatzi; Michael P Wajnrajch; Perrin C White; Alan E Zuckerman Journal: Int J Pediatr Endocrinol Date: 2011-01-10