Transition to adult care: experiences and expectations of adolescents with a chronic illness

Abstract

Subspecialty paediatric providers should anticipate common fears and concerns of adolescents and discuss the benefits of transfer to adult-oriented care. Further evaluation of existing transition programmes is an area for future study and is necessary for improvement of the continuum of care for adolescents with chronic medical conditions.

Children's experiences of living with juvenile idiopathic arthritis: A thematic synthesis of qualitative studies

“…Transitional care in rheumatology is widely advocated and has been shown to improve health-related quality of life (29,31). In our review, only 3 qualitative studies have elicited views from adolescents on transition (32)(33)(34). Future work is needed that actively involves patients during the whole process of transition and to ensure that perspectives, priorities, and concerns are addressed in order to improve medical and quality of life outcomes in the long term.…”

Adolescents’ and young adults’ transition experiences when transferring from paediatric to adult care: A qualitative metasynthesis

“…The adult-care provider might have little knowledge about the transferred patient's condition, making the young adult worried about not receiving the right level of care (Tuchman et al, 2008). They tired of retelling their life story and described the transition as being in no man's land (Anthony et al, 2009, Patterson and Lanier, 1999, Valenzuela et al, 2011.…”

Transition to Adult Care: A Statewide Survey among Pediatric Hemoglobinopathy Specialty Centers in New York

“…Without timely follow-up to check whether the patient experienced complications or problems with the transition, patients might become lost in the health care system. Studies have shown that patients with long-term special healthcare needs are more vulnerable to abrupt environmental changes, including changes in the healthcare setting [16] and concern about building new relationships with adult health care providers [17]. When patients are not transferred appropriately or are transferred abruptly, they may experience discontinuation of medical care and emotional care which may exacerbate preexisting health conditions.…”

“…The primary concern of young adults regarded their ability to pay and acceptance by adult care providers [18]. Studies have identified a lack of information on transition, fear of departing from their familiar healthcare provider [13] and embarking on a relationship with a new provider [17] as major concerns on transition to adult care. Once young patients were moved to adult care successfully, they acknowledged benefits of the adultoriented system even though most young patients were concerned about adaptation prior to transition [17].…”