Cook Children's Health Care System, Fort Worth, TX, USA.
Department of Urology, Boston Children's Hospital, Harvard Medical School, Boston, MA, USA.
Pediatr Nephrol. 2024 Feb;39(2):371-382. doi: 10.1007/s00467-023-06049-y. Epub 2023 Jul 6.
Individuals with bladder exstrophy-epispadias complex (EEC) need long-term integrated medical/surgical and psychosocial care. These individuals are at risk for medical and surgical complications and experience social and psychological obstacles related to their genitourinary anomaly. This care needs to be accessible, comprehensive, and coordinated. Multiple surgical interventions, reoccurring hospitalizations, urinary and fecal incontinence, extensive treatment regimens for continent diversions, genital differences, and sexual health implications affect the quality of life for the EEC patient. Interventions must include psychosocial support, medical literacy initiatives, behavioral health services, school and educational consultation, peer-to-peer opportunities, referrals to disease-specific camps, mitigation of adverse childhood events (ACEs), formal transition of care to adult providers, family and teen advisory opportunities, and clinical care coordination. The priority of long-term kidney health will necessitate strong collaboration among urology and nephrology teams. Given the rarity of these conditions, multi-center and global efforts are paramount in the trajectory of improving care for the EEC population. To achieve the highest standards of care and ensure that individuals with EEC can thrive in their environment, multidisciplinary and integrated medical/surgical and psychosocial services are imperative.
患有膀胱外翻-尿道上裂复合畸形（EEC）的个体需要长期的综合医疗/手术和心理社会护理。这些人存在医疗和手术并发症的风险，并经历与他们的泌尿生殖异常相关的社会和心理障碍。这种护理需要方便、全面和协调。多次手术干预、反复住院、尿失禁和粪失禁、广泛的控尿转流治疗方案、生殖器差异以及性健康问题都会影响 EEC 患者的生活质量。干预措施必须包括心理社会支持、医学素养计划、行为健康服务、学校和教育咨询、同伴机会、向特定疾病营地的转诊、减轻不良儿童事件（ACEs）、向成人提供者的正式过渡护理、家庭和青少年咨询机会以及临床护理协调。长期肾脏健康的重点将需要泌尿科和肾脏病团队之间的紧密合作。鉴于这些情况的罕见性，多中心和全球的努力在改善 EEC 人群护理的过程中至关重要。为了达到最高的护理标准，并确保 EEC 患者能够在其环境中茁壮成长，多学科和综合医疗/手术和心理社会服务是必不可少的。
