Transition from pediatric to adult care in patients with Turner syndrome in Italy: a consensus statement by the TRAMITI project

被引:3
|
作者
Aversa, T. [1 ,2 ]
De Sanctis, L. [3 ,4 ]
Faienza, M. F. [5 ]
Gambineri, A. [6 ]
Balducci, A. [7 ]
D'Aprile, R. [8 ,9 ]
Di Somma, C. [10 ]
Giavoli, C. [11 ]
Grossi, A. [12 ]
Meriggiola, M. C. [13 ]
Profka, E. [14 ]
Salerno, M. [15 ]
Stagi, S. [16 ,17 ]
Scarano, E. [18 ]
Zatelli, M. C. [19 ]
Wasniewska, M. [1 ,2 ]
机构
[1] Univ Messina, Dept Human Pathol Adulthood & Childhood, Messina, Italy
[2] Univ Hosp G Martino, Pediat Unit, Via Consolare Valeria 1, I-98124 Messina, Italy
[3] Regina Margher Children Hosp, Pediat Endocrinol, Turin, Italy
[4] Univ Turin, Dept Publ Hlth & Pediat Sci, Turin, Italy
[5] Univ Bari Aldo Moro, Dept Precis & Regenerat Med & Ionian Area, I-70124 Bari, Italy
[6] IRCCS Azienda Osped Univ Bologna, Dept Med & Surg Sci DIMEC, Div Endocrinol & Diabet Prevent & Care, Bologna, Italy
[7] IRCCS Azienda Ospedal Univ Bologna, Dept Cardiothorac & Vasc Med, Pediat Cardiol & Adult Congenital Heart Dis Progra, Bologna, Italy
[8] Univ Padua, Dept Womens & Childrens Hlth, Padua, Italy
[9] AFaDOC Assoc OdV, Vicenza, Italy
[10] AOU Federico II, Unit Endocrinol, Naples, Italy
[11] Fdn IRCCS Ca Granda Osped Maggiore Policlin, Endocrinol Unit, Milan, Italy
[12] Bambino Gesu Pediat Hosp, Endocrine Pathol Chron & Posttumor Dis Unit, Rome, Italy
[13] IRCCS Azienda Osped Univ Bologna, Dept Med & Surg Sci DIMEC, Div Gynecol & Physiopathol Reprod, Bologna, Italy
[14] Fdn IRCCS Ca Granda Osped Maggiore Policlin, Endocrinol Unit, Milan, Italy
[15] Univ Naples Federico II, Dept Translat Med Sci, Pediat Sect, Naples, Italy
[16] Univ Florence, Hlth Sci Dept, Florence, Italy
[17] Meyer Childrens Hosp IRCCS, Florence, Italy
[18] IRCCS Azienda Osped Univ Bologna, Pediat Unit, Bologna, Italy
[19] Univ Ferrara, Dept Med Sci, Sect Endocrinol Geriatr & Internal Med, Ferrara, Italy
关键词
Delphi consensus; Multidisciplinary care; Patient-centered approach; Transition management; Turner syndrome; CONGENITAL HEART-DISEASE; BONE-MINERAL DENSITY; BODY-COMPOSITION; CARBOHYDRATE-METABOLISM; REPLACEMENT THERAPY; HORMONE REPLACEMENT; CARDIOVASCULAR RISK; AORTIC DISSECTION; EUROPEAN-SOCIETY; YOUNG-ADULTS;
D O I
10.1007/s40618-024-02315-4
中图分类号
R5 [内科学];
学科分类号
1002 ; 100201 ;
摘要
PurposeTransition 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.MethodsA 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.ResultsA 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.ConclusionsThe 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.
引用
收藏
页码:1585 / 1598
页数:14
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