Status of the transition/transfer process for adolescents with chronic diseases at a national pediatric referral hospital in Argentina

Abstract

Introduction:The shift of adolescents from a pediatric to an adult health care facility is a complex process. The objective of this study was to assess the transition/transfer process for adolescents with chronic diseases at Hospital Garrahan. Methods: Observational, cross-sectional, qualitative-quantitative study. Retrospective statistical data were obtained in relation to outpatient visits of patients aged 16-26; surveys and/or interviews were done with health care providers, adolescents, and family members from different follow-up programs. Results: The prevalence of care provided to individuals older than 16 years was 7.2%. Surveys were administered to 54 attending health care providers, 150 patients (16-26.7 years old) and 141 family members. In addition, 45 health care providers with management functions were interviewed. Health care providers: 39% had received training on transition. All identified barriers and facilitators among the different participants and facilities. They recognized the importance of encouraging autonomy among their patients, but only 30% of them interviewed their patients alone, and 56.6% delivered medical reports. Strategies: the median age of transfer was 18 years (13-20); 62% had a protocol; 84% had an informal agreement with another facility; joint or parallel care: 49%; only 20% implemented a transition plan. Patients and family members: 4.7% of adolescents attended visits alone, and health care providers had asked 45% about their autonomy and preparation to take care of their health. Adolescents and their parents had feelings (mostly negative) regarding the process and identified facilitation strategies, such as receiving a summary, knowing the new facility, and having trained health care providers. Conclusions: The transition process for adolescents with chronic diseases is still deficient and approaching it involves health care teams and the families. A lack of formal inter-institutional agreements was identified, although there were more informal agreements among health care providers; besides, the need to encourage chronically-ill patients' autonomy was also determined. In relation to facilitation strategies, patients and parents mainly recognized the need to have a medical summary, health care guidelines, and trust in the new provider.

Instruments Measuring Self-Care in Children and Young Adults With Chronic Conditions: A Systematic Review

“…Four instruments asked also the parents to fill in the questionnaire. This aspect might show how the family maintain a central and vital role in supporting both the children—during the pre and scholar age—and adolescents/young adults ( 79 , 80 ).…”

Challenges in Transition From Childhood to Adulthood Care in Rare Metabolic Diseases: Results From the First Multi-Center European Survey

“…But up to now little has been done to ensure that transition in IMDs is performed in a formalized, standardized, and authoritative manner. Although current literature on transition for chronic diseases in general is quite extensive (15)(16)(17), for IMDs only a few centers have created specific transition guidelines (12,18,19). In addition, an overview of the different transition practices and challenges in Europe has never been attempted.…”