Results of the current study indicate that nearly 30% of the participants were nonadherent with their immunosuppressant medications, and over 30% were nonadherent to recommended clinic visits. This is consistent with previous reports that medication nonadherence is common among adolescent transplant recipients (15
). There was a significant association between age and nonadherence, with older adolescents and young adults demonstrating higher rates of nonadherence compared to the younger children. This is concerning as chronological age is the most common criterion used to determine readiness to transfer from pediatric to adult-centered care, with 16–22 years being the most frequently cited age range to start the transition process (33
). As medication adherence and health outcomes may both be affected by changes associated with a transfer to a new medical provider, this is a time of increased risk for adolescent and young adult transplant recipients.
With respect to the assessment of transition readiness, perceived self-management skills, perceived regimen knowledge, and psychosocial adjustment increased with chronological age. Yet, the association between age and performance on the demonstrated skills domain did not reach statistical significance. This suggests that while older adolescents and young adults may perceive that they have sufficient regimen knowledge and self-management skills, their chronological age is not associated with demonstrated self-management skills, including the ability to describe their medical regimen or the ability to recognize critical health symptoms. The ability to recognize symptoms and demonstrate when and how to seek urgent medical care is cited as an important component of the transition process (5
We hypothesized that higher TRS scores would be associated with higher rates of adherence. On the contrary, the present study found that increased scores on the adolescent/young adult self-management skills scale were associated with higher rates of medication nonadherence. Specifically, higher scores on the self-management scale were associated with higher cyclosporine SDs and increased proportion of immunosuppressant blood values below target range, which is indicative of suboptimal medication intake (34
). Within the self-management domain, increased allocation of responsibility for medication-related tasks to the adolescent/young adult was also associated with higher proportion of immunosuppressant blood levels below range.
Although older adolescents/young adults perceived greater self-management, they were at higher risk for medication nonadherence. Moreover, with increasing age, this population is being monitored less by their parents/caregivers. Thus, the transition of medication-related responsibilities from parents to adolescents may not be successful as evidenced by poor medication adherence in the older adolescents/young adults. Likewise, research has demonstrated that increased parental monitoring is associated with improved adherence and health outcomes in other chronic illness groups, including adolescents with diabetes (35
), HIV (36
) and asthma (17
). In addition, a recent report suggests that adolescent liver transplant recipients are inconsistent with their health management tasks (37
). Thus, it is critical that attention be given to the role of parental monitoring and supervision of medication related tasks during the transition process as adolescents begin to demonstrate mastery of health management tasks.
Parents’ knowledge of the adolescent’s medical regimen was significantly correlated with the rate of clinic attendance. It is possible that the rate of clinic attendance is a measure of parental adherence to the regimen rather than the adolescent/young adult’s adherence. Further research to investigate the impact of adolescent clinic attendance without their parent on transition readiness and adherence is warranted, particularly as it relates to the allocation of regimen responsibility.
The results of the present study should be viewed in light of study limitations. The transition readiness survey used in the present study was developed for clinical use to guide intervention. This was not a prospective measurement development study, thus the construct and content validity of the TRS were not investigated prior to its administration for clinical purposes. Moreover, given the retrospective nature of this study, the predictive validity of the TRS as it relates to medication adherence and successful transfer of care is not known. Lastly, this retrospective, cross-sectional study was conducted within a single pediatric liver transplant program which limits generalizability. Within this single center study, relatively few participants were receiving cyclosporine as their primary immunosuppressant medication (N=11). Thus, the significant association between higher cyclosporine SDs and higher perceived self-management skills should be interpreted with caution. Further multi-center study of the association between medication adherence as measured by immunosuppressant variability and transition-readiness skills is warranted.
Unfortunately, while many clinical programs strive to enhance the acquisition of self-management skills in adolescents, they do not routinely assess transition readiness, including the ability to independently manage health care needs (38
). One barrier to the routine assessment of transition skills may relate to the lack of a validated instrument to assess transition-related self-management skills. There is a critical need for the development and validation of objective assessment tools to empirically evaluate the pediatric patient’s readiness to move from a pediatric to adult-focused transplant health care. We are presently revising the TRS by conducting additional quantitative analyses as well as qualitative research with key informants regarding areas of transition which need further development. These data will inform the development of a revised TRS which will be piloted with a broader sample of adolescent/young adult transplant recipients across transplant centers. Future research will also incorporate other measures of self-management, allocation of health care responsibility, and health outcomes, in order to evaluation the concurrent and predictive validity of the TRS. This will allow for the refinement of questions and domains within the instrument.
Limitations aside, the present study has notable clinical implications. The current literature recommends that medical stability is a critical variable in the transfer from pediatric to adult-centered care (5
). Given that medication nonadherence is associated with increased risk for medical complications, particularly among adolescent transplant recipients (41
), targeting problems of medication nonadherence should be an essential component of the transition process. While medication adherence may not be sufficient for optimal health care transitions, it is an essential component.
Self-management interventions are effective in promoting medication adherence in children with other chronic health conditions (43
), and there is increasing recognition that self-management skills should be the goal of any transition program (11
). Interventions to promote transition readiness should also target parental monitoring and the transition of responsibility of health-related tasks from the parent to the adolescent/young adult. The inverse relationship between medication adherence and perceived self-management skills suggests that though adolescents perceive that they have adequate knowledge and management skills, they are not demonstrating the skills necessary for optimal medication management. This may relate to a variety of individual, family, and/or provider factors including motivation, health literacy, and communication with health care provider. In addition, the role of peer support has been suggested to be an important factor for adolescents and young adults transitioning from pediatric to adult-centered care (5
). The current study did not investigate the impact of peer and social support on medication adherence or transition-related skills. We are currently conducting prospective studies to examine factors that relate to medication adherence and self-management skills throughout the transition process.
Using this clinical tool, we have developed a transition program in our clinic which involves patient and parent education, behavioral goals and skill building and systematic planning for the transfer to adult-care. Clinic-based adherence interventions incorporate educational, motivational, behavioral and organizational strategies to foster the acquisition of self-management skills. We are currently engaged in ongoing quality improvement efforts to evaluate the effectiveness of our programs to promote medication adherence and transition skills in a systematic and developmentally appropriate manner.