PDF(Pubmed)
Abstract：
OBJECTIVE: Transition from pediatric to adult care is associated with significant challenges in patients with Turner syndrome (TS). The objective of the TRansition Age Management In Turner syndrome in Italy (TRAMITI) project was to improve the care provided to patients with TS by harnessing the knowledge and expertise of various Italian centers through a Delphi-like consensus process.
METHODS: A panel of 15 physicians and 1 psychologist discussed 4 key domains: transition and referral, sexual and bone health and oncological risks, social and psychological aspects and systemic and metabolic disorders.
RESULTS: A total of 41 consensus statements were drafted. The transition from pediatric to adult care is a critical period for patients with TS, necessitating tailored approaches and early disclosure of the diagnosis to promote self-reliance and healthcare autonomy. Fertility preservation and bone health strategies are recommended to mitigate long-term complications, and psychiatric evaluations are recommended to address the increased prevalence of anxiety and depression. The consensus also addresses the heightened risk of metabolic, cardiovascular and autoimmune disorders in patients with TS; regular screenings and interventions are advised to manage these conditions effectively. In addition, cardiac abnormalities, including aortic dissections, require regular monitoring and early surgical intervention if certain criteria are met.
CONCLUSIONS: The TRAMITI consensus statement provides valuable insights and evidence-based recommendations to guide healthcare practitioners in delivering comprehensive and patient-centered care for patients with TS. By addressing the complex medical and psychosocial aspects of the condition, this consensus aims to enhance TS management and improve the overall well-being and long-term outcomes of these individuals.
The TRansition Age Management in Turner syndrome in Italy (TRAMITI) project aims to improve care for individuals with Turner Syndrome (TS) during their transition from pediatric to adult care. A team of 15 physicians and 1 psychologist collaborated to create a comprehensive set of 41 consensus statements, covering four key areas: transition and referral, sexual and bone health and oncological risks, social and psychological aspects and systemic and metabolic disorders. The consensus statements highlight the importance of patient-centered care, early intervention and long-term monitoring. They emphasize a multidisciplinary approach to address the complex medical and psychosocial aspects of TS. During the critical transition period, tailored approaches and early disclosure of the diagnosis are recommended to promote self-reliance and healthcare autonomy. To mitigate long-term complications, the consensus addresses fertility preservation and bone health strategies. It also recommends psychological or psychiatric evaluations to tackle the increased prevalence of anxiety and depression in patients with TS. In addition, strategies for addressing the heightened risk of metabolic, cardiovascular and autoimmune disorders in patients with TS are proposed. Regular screenings and interventions are advised to effectively manage these conditions. Furthermore, cardiac abnormalities, including aortic dissections, require close monitoring and early surgical intervention if specific criteria are met. Overall, the TRAMITI consensus statement provides valuable insights and evidence-based recommendations. It offers guidance for healthcare practitioners in delivering comprehensive and patient-centered care for individuals with TS. By addressing both medical and psychosocial aspects, the consensus aims to enhance TS management and improve the well-being and long-term outcomes of those affected by this genetic disorder.
METHODS: A panel of 15 physicians and 1 psychologist discussed 4 key domains: transition and referral, sexual and bone health and oncological risks, social and psychological aspects and systemic and metabolic disorders.
RESULTS: A total of 41 consensus statements were drafted. The transition from pediatric to adult care is a critical period for patients with TS, necessitating tailored approaches and early disclosure of the diagnosis to promote self-reliance and healthcare autonomy. Fertility preservation and bone health strategies are recommended to mitigate long-term complications, and psychiatric evaluations are recommended to address the increased prevalence of anxiety and depression. The consensus also addresses the heightened risk of metabolic, cardiovascular and autoimmune disorders in patients with TS; regular screenings and interventions are advised to manage these conditions effectively. In addition, cardiac abnormalities, including aortic dissections, require regular monitoring and early surgical intervention if certain criteria are met.
CONCLUSIONS: The TRAMITI consensus statement provides valuable insights and evidence-based recommendations to guide healthcare practitioners in delivering comprehensive and patient-centered care for patients with TS. By addressing the complex medical and psychosocial aspects of the condition, this consensus aims to enhance TS management and improve the overall well-being and long-term outcomes of these individuals.
The TRansition Age Management in Turner syndrome in Italy (TRAMITI) project aims to improve care for individuals with Turner Syndrome (TS) during their transition from pediatric to adult care. A team of 15 physicians and 1 psychologist collaborated to create a comprehensive set of 41 consensus statements, covering four key areas: transition and referral, sexual and bone health and oncological risks, social and psychological aspects and systemic and metabolic disorders. The consensus statements highlight the importance of patient-centered care, early intervention and long-term monitoring. They emphasize a multidisciplinary approach to address the complex medical and psychosocial aspects of TS. During the critical transition period, tailored approaches and early disclosure of the diagnosis are recommended to promote self-reliance and healthcare autonomy. To mitigate long-term complications, the consensus addresses fertility preservation and bone health strategies. It also recommends psychological or psychiatric evaluations to tackle the increased prevalence of anxiety and depression in patients with TS. In addition, strategies for addressing the heightened risk of metabolic, cardiovascular and autoimmune disorders in patients with TS are proposed. Regular screenings and interventions are advised to effectively manage these conditions. Furthermore, cardiac abnormalities, including aortic dissections, require close monitoring and early surgical intervention if specific criteria are met. Overall, the TRAMITI consensus statement provides valuable insights and evidence-based recommendations. It offers guidance for healthcare practitioners in delivering comprehensive and patient-centered care for individuals with TS. By addressing both medical and psychosocial aspects, the consensus aims to enhance TS management and improve the well-being and long-term outcomes of those affected by this genetic disorder.
摘要：
目的：从儿童护理到成人护理的过渡与特纳综合征（TS）患者的重大挑战有关。意大利特纳综合征的过渡年龄管理（TRAMITI）项目的目标是通过类似Delphi的共识过程，利用意大利各个中心的知识和专业知识来改善对TS患者的护理。
方法：由15名医生和1名心理学家组成的小组讨论了4个关键领域：过渡和转诊，性和骨骼健康和肿瘤风险，社会和心理方面以及系统和代谢紊乱。
结果：共起草了41份共识声明。从儿科到成人护理的过渡是TS患者的关键时期，需要量身定制的方法和早期披露诊断，以促进自力更生和医疗保健自主权。建议保留生育力和骨骼健康策略以减轻长期并发症，建议进行精神病学评估，以解决焦虑和抑郁患病率增加的问题。共识还解决了代谢风险增加的问题，TS患者的心血管和自身免疫性疾病;建议定期筛查和干预措施以有效控制这些疾病。此外,心脏异常,包括主动脉夹层,如果符合某些标准，则需要定期监测和早期手术干预。
结论：TRAMITI共识声明提供了有价值的见解和基于证据的建议，以指导医疗从业者为TS患者提供全面和以患者为中心的护理。通过解决复杂的医学和社会心理方面的问题，这一共识旨在加强TS管理，改善这些人的整体福祉和长期成果。
意大利特纳综合征的过渡年龄管理（TRAMITI）项目旨在改善特纳综合征（TS）患者从儿科到成人护理过渡期间的护理。一个由15名医生和1名心理学家组成的团队合作创建了一套全面的41个共识声明，涵盖四个关键领域：过渡和转介，性和骨骼健康和肿瘤风险，社会和心理方面以及系统和代谢紊乱。共识声明强调了以患者为中心的护理的重要性，早期干预和长期监测。他们强调采用多学科方法来解决TS的复杂医学和社会心理方面。在关键的过渡期,建议采用量身定制的方法和早期披露诊断，以促进自力更生和医疗自主权。为了减轻长期并发症，共识涉及生育力保护和骨骼健康策略。它还建议进行心理或精神病学评估，以解决TS患者焦虑和抑郁患病率增加的问题。此外,解决代谢风险增加的策略，建议TS患者的心血管和自身免疫性疾病。建议定期筛查和干预措施以有效管理这些疾病。此外，心脏异常,包括主动脉夹层,如果满足特定标准，则需要密切监测和早期手术干预。总的来说,TRAMITI共识声明提供了宝贵的见解和基于证据的建议.它为医疗保健从业人员提供指导，为TS患者提供全面和以患者为中心的护理。通过解决医学和社会心理方面的问题，该共识旨在加强TS管理,改善受该遗传性疾病影响的患者的健康和长期结局.
方法：由15名医生和1名心理学家组成的小组讨论了4个关键领域：过渡和转诊，性和骨骼健康和肿瘤风险，社会和心理方面以及系统和代谢紊乱。
结果：共起草了41份共识声明。从儿科到成人护理的过渡是TS患者的关键时期，需要量身定制的方法和早期披露诊断，以促进自力更生和医疗保健自主权。建议保留生育力和骨骼健康策略以减轻长期并发症，建议进行精神病学评估，以解决焦虑和抑郁患病率增加的问题。共识还解决了代谢风险增加的问题，TS患者的心血管和自身免疫性疾病;建议定期筛查和干预措施以有效控制这些疾病。此外,心脏异常,包括主动脉夹层,如果符合某些标准，则需要定期监测和早期手术干预。
结论：TRAMITI共识声明提供了有价值的见解和基于证据的建议，以指导医疗从业者为TS患者提供全面和以患者为中心的护理。通过解决复杂的医学和社会心理方面的问题，这一共识旨在加强TS管理，改善这些人的整体福祉和长期成果。
意大利特纳综合征的过渡年龄管理（TRAMITI）项目旨在改善特纳综合征（TS）患者从儿科到成人护理过渡期间的护理。一个由15名医生和1名心理学家组成的团队合作创建了一套全面的41个共识声明，涵盖四个关键领域：过渡和转介，性和骨骼健康和肿瘤风险，社会和心理方面以及系统和代谢紊乱。共识声明强调了以患者为中心的护理的重要性，早期干预和长期监测。他们强调采用多学科方法来解决TS的复杂医学和社会心理方面。在关键的过渡期,建议采用量身定制的方法和早期披露诊断，以促进自力更生和医疗自主权。为了减轻长期并发症，共识涉及生育力保护和骨骼健康策略。它还建议进行心理或精神病学评估，以解决TS患者焦虑和抑郁患病率增加的问题。此外,解决代谢风险增加的策略，建议TS患者的心血管和自身免疫性疾病。建议定期筛查和干预措施以有效管理这些疾病。此外，心脏异常,包括主动脉夹层,如果满足特定标准，则需要密切监测和早期手术干预。总的来说,TRAMITI共识声明提供了宝贵的见解和基于证据的建议.它为医疗保健从业人员提供指导，为TS患者提供全面和以患者为中心的护理。通过解决医学和社会心理方面的问题，该共识旨在加强TS管理,改善受该遗传性疾病影响的患者的健康和长期结局.
