Vidal Flor Mercè, Jansà I Morató Margarida, Yoldi Vergara Carmen, Cardona-Hernández Roque, Giménez Alvárez Marga, Conget Donlo Ignacio, Isla Pera Pilar
Diabetes Unit, Department of Endocrinology and Nutrition, Hospital Clínic of Barcelona, Barcelona, Spain.
Diabetes Unit, Endocrinology Service, Hospital Sant Joan de Déu, Esplugues de Llobregat, Barcelona, Spain.
Patient Prefer Adherence. 2022 Aug 19;16:2229-2246. doi: 10.2147/PPA.S363081. eCollection 2022.
The management of type 1 diabetes (T1D) is especially complex during adolescence when youths are transferred to adult care centres. The objectives of this qualitative study were to: a) determine the expectations of young T1D patients prior to transfer, b) evaluate the transfer process between the 2 centres, and c) evaluate the therapeutic education and care programme (TECP) in the adult centre from their point of view.
Opinion sampling of adolescents from 2018-2019 was performed: Phase 1: adolescents with T1D prior to transfer to the adult hospital; Phase 2: adolescents with T1D one or two years after transfer and having undergone TECP. A focus group (1.5h) and semi-structured interviews (45 min) were performed and taped, transcribed, and sent to the participants for confirmation. Date analysis was performed of the transcriptions of the focus group and interviews. Fragments were selected and meta-categories created.
Eleven youths accepted to participate: 7 in Phase 1, 4 repeated in Phase 2 and 4 more transferred 2 years previously were added. The meta-categories obtained were: 1) perception of the quality of care and therapeutic education in the paediatric hospital. 2) transfer to the adult hospital. 3) experience of the youths 1-2 years after transfer and having undergone TECP. The data are presented in narrative form and are supported with text fragments of the participants' discussions.
Analysis of patients' experience complemented by clinical-educational evaluation of TECP provides understanding of the perspectives of youths on the complexity of living with a chronic disease since childhood. It also provides information regarding the factors favouring quality care and therapeutic education, the complexity of transfer from paediatric to adult care, determination of the strong and weak points and the establishment of strategies to improve the programme.
1型糖尿病（T1D）患者在青春期转至成人护理中心时，其管理尤为复杂。本定性研究的目的是：a）确定年轻的T1D患者在转院之前的期望；b）评估两个中心之间的转院过程；c）从他们的角度评估成人中心的治疗教育与护理计划（TECP）。
对2018年至2019年的青少年进行意见抽样：第1阶段：转至成人医院之前患有T1D的青少年；第2阶段：转院一至两年且接受过TECP的患有T1D的青少年。进行了焦点小组讨论（1.5小时）和半结构化访谈（45分钟），并录音、转录，然后发给参与者进行确认。对焦点小组讨论和访谈的转录内容进行数据分析。选取片段并创建元类别。
11名青少年同意参与：第1阶段7名，第2阶段4名重复参与，另外增加了4名两年前转院的青少年。获得的元类别有：1）对儿科医院护理质量和治疗教育的认知。2）转至成人医院。3）转院一至两年且接受过TECP的青少年的经历。数据以叙述形式呈现，并辅以参与者讨论的文本片段。
对患者经历的分析辅以对TECP的临床教育评估，有助于理解青少年对自幼患慢性病复杂性的看法。它还提供了有关有利于优质护理和治疗教育的因素、从儿科护理转至成人护理的复杂性、优缺点的确定以及改进该计划策略的信息。
