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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.
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OBJECTIVE: Evaluate the results of a healthcare and therapeutic education programme (TEP) aimed at young patients with type 1 diabetes (T1D) transferred from a paediatric centre. METHODOLOGY: This was a prospective, pre-postest in young T1D patients transferred from 2005-2015. The programme has four phases: coordinated transfer, evaluation and objective pacting, knowledge (DKQ2) adherence (SCI-R.es) and quality of life (DQoL and SF12). Results were compared according to Multiple Daily Injections (MDI) vs. Continuous Subcutaneous Insulin Infusión (CSII) and adherence (SCI-R.es < 65 vs. > 65%). RESULTS: A total of 330 patients were transferred (age 18.19 ± 0.82 years, 49% females, glycated haemoglobin [HbA1c] 8.6 ± 1.4%). The programme was completed by 68%, and 61% did a group course. While no changes in HbA1c were observed at one year (8.3 ± 1.4 vs. 8.2 ± 1.4%), there were changes in severe hypoglycaemias/patient/year (0.23 ± 0.64 to 0.05 ± 0.34 p < 0.001) and mild > 5 hypoglycaemias/patient/week (6.9% vs. 3.9% p = 0.09). DQK2 knowledge increased (25.7 ± 3.6 vs. 27.8 ± 3.8 p < 0.001), with no changes in quality of life or grade of adherence. Patients with CSII (n = 21) performed more blood glucose controls and showed greater programme adherence with no changes in metabolic control. Patients with the best initial adherence presented the best control (p < 0.0001). A lower initial HbA1c and receiving the group course were associated with better clinical HbA1c results ≥ 0.5% (p < 0.05) CONCLUSIONS: The TEP improved some parameters of metabolic control without modifying the quality of life in young T1D patients. When comparing patients on MDI vs. CSII, there were no differences in metabolic control but there were when differences were evaluated considering treatment adherence.
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El traslado de los jóvenes con diabetes tipo 1 desde los centros pediátricos a las unidades de adultos se realiza durante la adolescencia, periodo caracterizado por cambios fisiológicos y psicológicos que los hace especialmente vulnerables. En este periodo se aconseja que las familias y/o cuidadores trasladen, en parte, la responsabilidad del manejo de la diabetes a los jóvenes de forma progresiva. El cambio de rol en el autocuidado, de centro y de profesionales añadido a la gran vulnerabilidad se relaciona con el empeoramiento del control metabólico y pérdida de seguimiento asistencial. Se requieren programas educativos específicos, estructurados y coordinados con los centros pediátricos para minimizar los posibles efectos adversos del traslado y mantener y/o mejorar el control metabólico y la calidad de vida de estos jóvenes. Siguiendo las recomendaciones de la Sociedad Española de Diabetes y la Sociedad Española de Endocrinología Pediátrica, presentamos la estructura, el proceso y los resultados del programa de acogida a los jóvenes con diabetes tipo 1 trasladados desde el centro pediátrico de Sant Joan de Déu al Hospital Clínic de Barcelona, durante el primer año después del traslado
The transfer of young people with type 1 diabetes from pediatric centers to adult units takes place during adolescence, a period characterized by physiological and psychological changes that make them especially vulnerable. In this period it is recommended that families and /or caregivers progressively leave the responsibility of managing diabetes to the young people themselves. The change of role in self-care, center and professionals in addition to the inherent vulnerability is related to the worsening of metabolic control and loss of these patients to follow-up care. Specific educational programs are required, which are structured and coordinated with the pediatric centers to minimize the possible adverse effects of the transfer and maintain and / or improve the metabolic control and the quality of life of these young people. Following the recommendations of the Spanish Society of Diabetes and the Spanish Society of Pediatric Endocrinology, we present the structure, process and results of the reception program for young people with type 1 diabetes transferred from the pediatric center of Sant Joan de Déu to the Hospital Clínic of Barcelona during the first year after the transfer
Assuntos
Humanos , Masculino , Feminino , Adolescente , Adulto Jovem , Educação de Pacientes como Assunto/métodos , Continuidade da Assistência ao Paciente , Diabetes Mellitus Tipo 1/terapia , Diabetes Mellitus Tipo 1/enfermagem , Transferência de Pacientes , Estudos Longitudinais , Estudos ProspectivosRESUMO
OBJECTIVE: To assess adherence to self-monitoring of blood glucose and the main factors associated with it, particularly those related to self-perception of glycemia, in patients with diabetes on insulin therapy. PATIENTS AND METHODS: An epidemiological, observational, prospective, multicenter study conducted in standard clinical practice in primary care, outpatient centers, and hospitals from different Spanish regions. Sociodemographic, clinical and treatment data were collected. Patients were considered adherent to self-monitoring if they performed the minimum number of controls recommended by the Spanish Society of Diabetes (SED). RESULTS: Adherence was shown in 61.6% of patients. Factors associated to adherence included treatment with less than three insulin injections daily (OR 2.678; 95% CI 2.048- 3.5029; p <0.001), presence of peripheral vascular disease (OR 1.529; 95% CI 1.077 - 2.171; p=0.018), alcohol abstinence (OR 1.442; 95% CI 1.118 - 1.858; p=0.005), and collection of the glucose test strips from the pharmacy (OR 1.275; 95% CI 1.026 - 1.584; p=0.028). Adequate self-perception of glycemia was found in 21.4% of patients. CONCLUSIONS: Our results show a suboptimal adherence to the recommended protocol for blood glucose self-monitoring in patients with diabetes on insulin therapy. Independent variables associated to good adherence were treatment with less than three insulin injections dailyu, presence of peripheral vascular disease, alcohol abstinence, and collection of glucose test strips from the pharmacy.
