Transitional care management in patients with auto-inflammatory diseases: experience of cooperation of a paediatric and adult centre

F. Soscia, L. L. Sicignano, E. Verrecchia, Francesca Ardenti Morini, M. G. Massaro, F. Civitelli, F. Ferrari, D. Rigante, E. Cortis, R. Manna
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Abstract

Abstract Objectives Auto-inflammatory Diseases (AIDs) are a group of diseases with a strong genetic component, inducing an inappropriate activation of innate immunity. The patients with pediatric onset will face the transitional care (TC) from a pediatrician to an adult care setting, during the critical phase of the adolescence. That implies a risk of failure and drop out, due to the different approach of pediatrician compared to the adult doctor. To describe the model of TC for AIDs from a paediatric to adult centre of two hospitals in Rome, and to pointing out the different steps emerged from specific experiences. Methods In November 2020, a Board of paediatricians and internists discussed their experience to identify “hot topics” for a successful management of TC. Results The Board agreed on the optimal time for the transition (12–18 years). Specific elements to be considered are the reached level of emotional and intellectual maturity, and the clinical stability of the disease. Conclusions The TC of patients with chronic AIDs, requires a strong cooperation to define the adequate follow-up, and to guarantee the compliance to the treatment. This model allows us to investigate AIDs complex cases, requiring a long period of observations.
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自体炎性疾病患者的过渡护理管理:儿科和成人中心合作的经验
摘要目的自身炎症性疾病(AIDs)是一组具有强烈遗传成分的疾病,可诱导先天免疫的不适当激活。在青春期的关键阶段,儿科发病患者将面临从儿科医生到成人护理环境的过渡护理(TC)。这意味着失败和辍学的风险,因为儿科医生与成年医生的方法不同。描述罗马两家医院从儿科到成人中心的艾滋病TC模式,并指出具体经验中出现的不同步骤。方法2020年11月,儿科医生和内科医生委员会讨论了他们的经验,以确定成功管理TC的“热门话题”。结果委员会就过渡的最佳时间(12-18年)达成一致。需要考虑的具体因素是达到的情绪和智力成熟程度,以及疾病的临床稳定性。结论慢性艾滋病患者的TC需要强有力的配合,以确定适当的随访,并保证治疗的依从性。这个模型使我们能够调查艾滋病的复杂病例,需要长时间的观察。
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Navigating liminal spaces together: a qualitative metasynthesis of youth and parent experiences of healthcare transition. Gaps in transition readiness measurement: a comparison of instruments to a conceptual model. Provider perspectives of barriers and facilitators to the transition from pediatric to adult care: a qualitative descriptive study using the COM-B model of behaviour Transitional care management in patients with auto-inflammatory diseases: experience of cooperation of a paediatric and adult centre Protocol for READY2Exit: a patient-oriented, mixed methods study examining transition readiness in adolescents with co-occurring physical and mental health conditions
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