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

• Published in: Patient preference and adherence 2022-08, Vol.16, p.2229-2246
• Main Authors: Flor, Merce Vidal, Morato, Margarida Jansa i, Vergara, Carmen Yoldi, Cardona-Hernandez, Roque, Alvarez, Marga Gimenez, Donlo, Ignacio Conget, Pera, Pilar Isla
• Format: Article
• Language: English
• Subjects: adolescents; Adults; Care and treatment; Child development; Children; Chronic illnesses; Data analysis; Diabetes; Diagnosis; Discussion groups; Diseases; Education; Evaluation; Informed consent; Interviews; Metabolism; Original Research; Patient compliance; patient experience; Patients; Pediatrics; qualitative research; Quality of life; Teenagers; therapeutic patient education; transition to adult care; Type 1 diabetes
• ISSN: 1177-889X; 1177-889X
• DOI: 10.2147/PPA.S363081

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. Keywords: Type 1 diabetes, adolescents, transition to adult care, qualitative research, patient experience, therapeutic patient education