Type 1 Diabetes Patient Experiences Before and After Transfer from a Paediatric to an Adult Hospital

Abstract

Introduction 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. Material and Methods 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. Results 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. Discussion and conclusions 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.

Beyond Therapeutic Adherence: Alternative Pathways for Understanding Medical Treatment in Type 1 Diabetes Mellitus

“…Treatment also involves particularities at some key moments and transitions in the life cycle. The literature points out that it is necessary to assess educational needs and act accordingly at the reception of the diagnosis annually—according to the outcomes and emotional needs of the patients—when complications or factors impacting self-management arise and at the transition from one care system to another (i.e., from pediatric to adult care) [ 47 ]. In relation to life cycle transitions, studies report that the passage from childhood to adolescence is characterized as demanding for both patients and their families because it involves greater independence [ 48 ].…”

Determinants of health‐related quality of life in children and adolescents living with type 1 diabetes mellitus during the COVID‐19 pandemic

“…Previous studies have highlighted several factors associated with worse HRQOL in paediatric patients with T1DM, such as female sex and age. In addition, a large body of evidence indicates that in adolescents with T1DM, the subjective experience of HRQOL can be one of the predictors of accepting obligations for self‐management of the disease, and their readiness to transfer to the adult healthcare system (Delamater et al, 2018 ; Murillo et al, 2017 ; Vidal Flor et al, 2022 ). Diabetes Specialist Nurses (DSNs) is crucial in providing good patient care and promoting self‐care management.…”