Transition from paediatric to adult care for persons with cystic fibrosis: Patient and parent perspectives

Abstract

There are significant concerns about the transition process in this population. Given the expressed need for autonomy and a transition clinic, the basis for a smoother transition in the future has been laid.

The transition of kidney transplant recipients: a work in progress

“…However, in contrast to other studies that have focused solely on patient satisfaction [17], a strength of this study is the use of some objective measures of health outcomes over the 12-month period immediately preceding and following transfer. Reduced attendance at outpatient clinic appointments following the transfer is an interesting observation of uncertain significance.…”

Patients' Perspective on Factors That Facilitate Transition From Child-centered to Adult-centered Health Care: A Theory Integrated Metasummary of Quantitative and Qualitative Studies

“…However, they reported wanting a young-adult clinic that would better respond to their age-secific needs in ACC [22,28,31] increased patients' concerns that the quality of care in ACC would not be comparable with the one received in CCC [34]. Patients have also voiced the fear that ACC providers would lack knowledge about early onset illnesses [22,23,28,31,35,36]. However, patients felt reassured when their CCC providers showed trust in the ACC providers to which they were referred [21].…”

“…Importantly, it seems that many patients report wanting independence but do not necessarily understand what the newly acquired independence will entail. To illustrate, in one study, patients stated they wanted to make decisions on their own but did not consider speaking to their doctor alone as important [36]. Patients' lack of desire for, or ambivalence toward, autonomous behavior may stem from an ambiguous preparation for self-care [40], or from overprotective parents and health care providers who may give patients the indirect message that they are unable to take care of themselves [46].…”

“…A widely reported patient recommendation is joint visits with providers from CCC and ACC, as well as visits to the ACC environment before the transfer [18,21,22,24,25,27,31,33,36,37,41,43,46,49,51,52]. Such visits reduced patients' fears and concerns about transition [18,34,36,51,53] and provided them with an opportunity to create relationships with providers in ACC, to get to know a familiar face before transfer, and improved transition outcomes [18,21,25,39,49,53].…”

Transition from child- to adult-orientated care for children with long-term health conditions: A process, not an event

“…In a study of patient and parent attitudes towards transition before and after the process in the cystic fibrosis population, age-related criteria were not supported. [7] They also do not make sense developmentally. This approach has been strongly supported by the Society for Adolescent Medicine [3] and the American Academy of Pediatrics.…”