■尽管小儿炎症性肠病(PIBD)的发病率持续上升,没有共识的过渡准则或标准化做法。
■我们旨在研究:(1)成功转移的决定因素,(2)转移与过渡对病程和患者依从性的影响,(3)PIBD患者独有的特点,在成人护理中需要特别注意。
■纵向,后续行动,2001年至2022年进行的对照研究,回顾性数据收集至2018年,因此具有前瞻性。
■三百五十一名PIBD患者参加了这项研究,其中152人被转移到成人护理,平均转移后随访时间为3年。73名患者参与了结构性转变,而79人自行转移到成人护理。主要结局指标是疾病活动(由PCDAI定义,PUCAI,CDAI,和梅奥分数)和课程,住院治疗,手术,IBD相关并发症,包括人体测量和骨密度,患者依从性,药物依从性,继续医疗。
■经历结构性转变的患者在缓解中花费的时间明显更多(83.6%±28.5%对77.5%±29.7%,p=0.0339),并且对药物的依从性更好(31.9%对16.4%的不依从率,p=0.0455)在成人护理中,自我转移的患者停止医疗护理的风险增加了1.59倍,复发的风险增加了1.88倍。转移后患者的依从性恶化(38.5%对29%,p=0.0002),在医疗保健系统之间的变化期间,失访率最高(12.7%),其中女性是危险因素(p=0.010)。PIBD患者在到达成人护理时经历过IBD相关并发症(23.4%)和以前的手术(15%),营养不良率高,增长减值,骨骼健康状况不佳。
■结构转变在确保PIBD患者的最佳病程和降低失访率方面起着关键作用。
■结构转变在确保PIBD患者的最佳疾病结局中起着关键作用,在我们的研究中,它与较低的疾病活动性有关,更少的复发,更好的药物依从性,与自我转移相比,失访率较低。
UNASSIGNED: Despite the continuously rising rate of pediatric-onset inflammatory bowel diseases (PIBD), there are no consensus transitional guidelines or standardized practices.
UNASSIGNED: We aimed to examine: (1) the determinants of a successful transfer, (2) the effects of the transfer versus transition on the disease course and patient compliance, (3) the unique characteristics of PIBD patients, that need special attention in adult care.
UNASSIGNED: Longitudinal, follow-up, controlled
study conducted between 2001 and 2022, with retrospective data collection until 2018, thence prospective.
UNASSIGNED: Three hundred fifty-one PIBD patients enrolled in the
study, of whom 152 were moved to adult care, with a mean post-transfer follow-up time of 3 years. Seventy-three patients took part in structured
transition, whereas 79 self-transferred to adult care. The main outcome measures were disease activity (defined by PCDAI, PUCAI, CDAI, and Mayo-scores) and course, hospitalizations, surgeries, IBD-related complications, including anthropometry and bone density, patient compliance, medication adherence, and continuation of medical care.
UNASSIGNED: Patients who underwent structured
transition spent significantly more time in remission (83.6% ± 28.5% versus 77.5% ± 29.7%, p = 0.0339) and had better adherence to their medications (31.9% versus 16.4% non-adherence rate, p = 0.0455) in adult care, with self-transferred patients having a 1.59-fold increased risk of discontinuing their medical care and a 1.88-fold increased risk of experiencing a relapse. Post-transfer the compliance of patients deteriorated (38.5% versus 29%, p = 0.0002), with the highest lost-to-follow-up rate during the changing period between the healthcare systems (12.7%), in which female gender was a risk factor (p = 0.010). PIBD patients had experienced IBD-related complications (23.4%) and former surgeries (15%) upon arriving at adult care, with high rates of malnutrition, growth impairment, and poor bone health.
UNASSIGNED: Structured transition plays a key role in ensuring the best disease course and lowering the lost-to-follow-up rate among PIBD patients.
UNASSIGNED: Structured transition plays a key role in ensuring the best disease outcome among PIBD patients, as in our
study it was associated with lower disease activity, fewer relapses, better medication adherence, and lower lost-to-follow-up rate as opposed to self-transfer.