Malbrunot-Wagner A-C, Bonnemains C, Troussier F, Darviot E, Chiffoleau M, Person C, Urban T, Giniès J-L
Département de pédiatrie, CHU d'Angers, 4, rue Larrey, 49933 Angers cedex 9, France.
Arch Pediatr. 2009 Mar;16(3):235-42. doi: 10.1016/j.arcped.2008.12.021. Epub 2009 Feb 6.
Even though patients with cystic fibrosis (CF) are continuously improving their life expectancy, guidelines for transition to adult services have not been clearly determined yet. The aim of this study was to analyze the management of this transition in the CF care center of Angers, France.
From their medical files, we analyzed the transfer of 22 patients with CF from pediatric to adult care. The perceptions of patients and caregivers regarding this transition were evaluated using anonymous questionnaires.
The initial objective was to transfer patients around 18 years of age, offering them 3 or 4 joint consultations with a pediatrician and adult lung specialist. The median age of transfer was 22 years and the median duration of the transition period was 9 months. Half of the patients had only 1 joint transfer consultation during transition. The patient reaching the age of 18 and maturity were the most common criteria mentioned for transfer. All highlighted problems leaving the pediatric team they had grown attached to and its familiar environment. Caregivers described the transfer as a success, whereas half of the patients were dissatisfied with it, with both patients and caregivers indicating that the transition was too short without enough joint consultations.
This study shows that this period is a major life event for the patient with CF. The transition process must be organized with the patient and independent behaviors should be encouraged. Adult and pediatric teams need to cooperate. Based on this experience and former medical data, we suggest a transition program for patients with CF.
尽管囊性纤维化(CF)患者的预期寿命在不断提高,但向成人医疗服务过渡的指南尚未明确确定。本研究的目的是分析法国昂热CF护理中心这种过渡的管理情况。
从他们的病历中,我们分析了22例CF患者从儿科护理向成人护理的转移情况。使用匿名问卷评估患者和护理人员对这种过渡的看法。
最初的目标是在患者18岁左右进行转移,为他们提供与儿科医生和成人肺部专家的3次或4次联合会诊。转移的中位年龄为22岁,过渡期的中位时长为9个月。一半的患者在过渡期间仅进行了1次联合转移会诊。达到18岁和成熟是提到的最常见的转移标准。所有人都强调了离开他们所依恋的儿科团队及其熟悉环境的问题。护理人员将转移描述为成功,而一半的患者对此不满意,患者和护理人员都表示过渡太短,联合会诊不足。
本研究表明,这段时期对CF患者来说是一个重大的生活事件。过渡过程必须与患者共同组织,并应鼓励其独立行为。成人和儿科团队需要合作。基于这一经验和以前的医学数据,我们为CF患者建议了一个过渡计划。