Adolescence and Transition to Adult Services: Are These Risky Times for Heart and/or Lung Recipients?

Abstract

Purpose Non-adherence is a well recognised concern for clinicians caring for adolescents requiring daily medication regimens. In some transplant scenarios serious adverse outcomes are documented. We wanted to establish if there were lessons about the timing or conduct of transition to adult services that might mitigate any such risk for heart and/or lung recipients. Methods and Materials Survival data and information from medical notes were used to look at outcomes for adolescent patients who had either remained in the paediatric service or transitioned to adult services. Phone interviews with 7 patients explored experiences of transition and data were thematically analysed. The date of transition was defined from the date last seen in the paediatric centre. Results From 1988-2011, 154 patients aged 16-26 years transitioned to 1 of 7 adult services, 11 of whom died within a year of transfer. Survival data across the age spectrum indicated a constant late hazard rate when expressed in terms of time since transplant but if hazard was expressed in terms of current age late teenage life seemed to be a time of particular risk, with patients aged 16-20 years in both the paediatric and adult service having a higher mortality rate. Psychological and emotional problems and issues with non-adherence were documented for a significant minority after transfer. Key themes from patient interviews focused on communication, information/preparation and transition-readiness. Attendance at a transition study day, individualised transition plans and contact with the adult centre prior to transfer were identified as particularly valued. Conclusions Late teenage years constitute a risky age for transplant patients although how biological, behavioural and organisational factors contribute to outcomes is not clear. For some individuals transition to adult services constitutes an additional risk while for others transition goes well. The goal is good transition for everyone, using an individually tailored approach and effective planning.