The Journal of surgical research · 2025
Elective Reconstruction for Children With Congenital Adrenal Hyperplasia: Evaluating Association of Familial Characteristics.
СтатьяПоддержка NIH: внешняя программаНазвание и аннотация: Перевод в очереди
Обработка статьи · этапы, ошибки и управление
Загрузка состояния…
Ошибки и ограничения
История · было → стало
Состояние обновляется каждые 5 секунд, пока блок открыт. Процент показывается только там, где известен объём работы. Пауза останавливает продолжение этапа; текущий запрос к источнику может завершиться.
Heller Kathleen, Madura Grace, Nawara Nourhan, Salevitz Daniel, Coronado Janett, Chawla Reeti, Hansen Erik, Grimsby Gwen, van Leeuwen Kathleen, Weidler Erica M
Аннотация
INTRODUCTION: Improved patient/family education and shared decision-making (SDM) for congenital adrenal hyperplasia (CAH) is needed. We aimed to evaluate patient/family characteristics and management choices since implementation of an SDM tool for CAH.
MATERIALS AND METHODS: CAH patients at a single institution from 2014 to 2024 were provided an SDM tool for management options. Families chose elective reconstruction of the clitoris and/or urogenital sinus (UGS) or only medically necessary procedures. Patients deferring surgery are followed for voiding difficulty, undergoing cystoscopy/vaginoscopy and imaging when indicated. UGS repair with introitoplasty is offered when obstruction is noted. Variables examined included race/ethnicity, procedures performed, clitoris and UGS anatomy, difficulty voiding, and imaging.
RESULTS: Sixteen patients fell into four categories: (1) full elective reconstruction (n = 4); (2) partial elective reconstruction (n = 2); (3) partial medically necessary reconstruction (n = 4) and; (4) deferral of reconstruction (n = 6). Common channel length of patients deferring surgery trended shorter without reaching statistical significance. When collapsed into non-Hispanic White versus persons of color, non-Hispanic White families were more likely to choose elective reconstruction versus delayed surgery (100% vs 0%, P = 0.001). Age in months at procedure was lower for elective reconstruction versus delayed reconstruction (8 versus 38, P = 0.05). Insurance type did not differ between groups.
CONCLUSIONS: Families of children with CAH who use an SDM process, combined with monitoring for voiding dysfunction, can choose to defer all or some reconstruction. Long-term follow-up and cultural and psychosocial factors influencing decision-making need to be investigated to ensure delivery of equitable care.
MATERIALS AND METHODS: CAH patients at a single institution from 2014 to 2024 were provided an SDM tool for management options. Families chose elective reconstruction of the clitoris and/or urogenital sinus (UGS) or only medically necessary procedures. Patients deferring surgery are followed for voiding difficulty, undergoing cystoscopy/vaginoscopy and imaging when indicated. UGS repair with introitoplasty is offered when obstruction is noted. Variables examined included race/ethnicity, procedures performed, clitoris and UGS anatomy, difficulty voiding, and imaging.
RESULTS: Sixteen patients fell into four categories: (1) full elective reconstruction (n = 4); (2) partial elective reconstruction (n = 2); (3) partial medically necessary reconstruction (n = 4) and; (4) deferral of reconstruction (n = 6). Common channel length of patients deferring surgery trended shorter without reaching statistical significance. When collapsed into non-Hispanic White versus persons of color, non-Hispanic White families were more likely to choose elective reconstruction versus delayed surgery (100% vs 0%, P = 0.001). Age in months at procedure was lower for elective reconstruction versus delayed reconstruction (8 versus 38, P = 0.05). Insurance type did not differ between groups.
CONCLUSIONS: Families of children with CAH who use an SDM process, combined with monitoring for voiding dysfunction, can choose to defer all or some reconstruction. Long-term follow-up and cultural and psychosocial factors influencing decision-making need to be investigated to ensure delivery of equitable care.