Boston Children's Hospital and Harvard Medical School, Boston, MA.
J Clin Rheumatol. 2024 Jun 1;30(4):159-167. doi: 10.1097/RHU.0000000000002062. Epub 2024 Mar 25.
Young adults with childhood-onset rheumatic diseases are more frequently establishing and continuing care with adult rheumatologists. The transfer of care can be challenging for both the young adult patients and their adult rheumatologists, in large part due to differences between pediatric-onset rheumatic diseases and their adult-onset counterparts, or due to the rarity of some pediatric-onset rheumatic conditions. Other challenges are due to cultural differences between pediatric and adult medical care and to the young adult needing to increasingly perform self-management skills that were previously managed by parents or other caregivers. In this review, we will provide a summary of strategies for working effectively with young adults as they transition to adult care. We will then discuss a subset of childhood-onset rheumatic diseases-including juvenile idiopathic arthritis, localized scleroderma, autoinflammatory diseases, pediatric-onset systemic lupus erythematosus, juvenile-onset dermatomyositis, and autoimmune encephalitis-for which clinical manifestations, management, and prognosis frequently differ between pediatric onset and adult onset. Our aim is to highlight differences that make caring for this population of transitioning young adults unique, providing tools and knowledge to empower the adult rheumatologist to care for these young adults in ways that are evidence-based, effective, efficient, and rewarding.
患有儿童期起病的风湿性疾病的年轻人越来越多地与成人风湿病专家建立并持续接受治疗。这种治疗的转移对年轻患者及其成人风湿病专家来说都是具有挑战性的,这在很大程度上是由于儿童期起病的风湿性疾病与成人期起病的风湿性疾病之间存在差异,或者是由于一些儿童期起病的风湿性疾病较为罕见。其他挑战还来自儿科和成人医疗保健之间的文化差异,以及年轻人需要越来越多地发挥以前由父母或其他照顾者管理的自我管理技能。在这篇综述中,我们将提供一些与年轻患者过渡到成人护理时有效合作的策略概述。然后,我们将讨论一组儿童期起病的风湿性疾病,包括幼年特发性关节炎、局限性硬皮病、自身炎症性疾病、儿童起病的系统性红斑狼疮、青少年起病的皮肌炎和自身免疫性脑炎,这些疾病在儿童起病和成人起病时的临床表现、管理和预后常常不同。我们的目的是强调使这一过渡时期的年轻患者群体的护理具有独特性的差异,为成人风湿病专家提供工具和知识,使他们能够以基于证据、有效、高效和有益的方式为这些年轻患者提供护理。