Abstract

Background:Transition from child-oriented to adult-oriented health care in Cystic Fibrosis (CF) has become more important over recent decades as the survival of people with this disease has increased. The transition process usually begins in adolescence, with full transfer completed in early adulthood.Objective:This study investigated the impact of a short-term transfer program on clinical markers in an adult CF cohort still being managed by pediatricians.Methods:Clinically relevant data from the year before (T-1), the time of Transfer (T) and the year after the transfer (T+1) were analysed retrospectively.Results:39 patients (median age 29.0 years; 64% male) were transferred between February and December 2016. Lung function had declined significantly in the year before transfer (in % predicted: Forced Expiratory Volume in 1 second (FEV), 62.8 vs. 57.7, p <0.05; Forced Vital Capacity (FVC), 79.9 vs. 71.1, p<0.05), but remained stable in the year after transfer (in % predicted: FEV: 56.3; FVC 68.2). BMI was stable over the whole observational period. There was no relevant change in chronic lung infection with P. aeruginosa, Methicillin-Resistant Staphylococcus aureus (MRSA) and Burkholderia sp. during the observation period. The number of patient contacts increased significantly in the year after versus the year before transfer (inpatient: 1.51 vs. 2.51, p<0.05; outpatient: 2.67 vs. 3.41, p<0.05).Conclusions:Our data show that, within the framework of a structured transfer process, it is possible to transfer a large number of adult CF patients, outside a classic transition program, from a pediatric to an adult CF center in a short period of time, without any relevant changes in clinical markers and, stability.

Highlights

  • The transition of chronically ill children from child- to adult-orientated health care should be conducted within the framework of a structured transition program, starting in adolescence [1, 2]

  • Our data show that, within the framework of a structured transfer process, it is possible to transfer a large number of adult Cystic Fibrosis (CF) patients, outside a classic transition program, from a pediatric to an adult CF center in a short period of time, without any relevant changes in clinical markers and, stability

  • Given that CF care used to be a pediatric domain in the past, many adult CF patients remain under pediatric care [11, 12]

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Summary

Introduction

The transition of chronically ill children from child- to adult-orientated health care should be conducted within the framework of a structured transition program, starting in adolescence [1, 2]. Existing programs focus on adolescents and young adults and deal with concerns about the transfer, transition readiness, psychosocial needs, and variations in care [22]. Overprotection, meaning strong support of pediatric care may harm the transition process; a mechanistic and pharmaco-therapy oriented treatment approach in the adult units might overburden those overprotected CF families. Due to structural changes at the childrens hospital we needed a program to transfer a large group of adult CF patients to an appropriate adult-based care in less than one year. The transition process usually begins in adolescence, with full transfer completed in early adulthood

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