ADOLESCENT PATIENT WITH CHRONIC KIDNEY DISEASE: READINESS FOR TRANSFER FROM PEDIATRIC INTO ADULT NEPHROLOGY HEALTHCARE SYSTEM, CHALLENGES OF THE TRANSITION. BIBLIOGRAPHICAL REVIEW AND AUTHORS’ OWN OBSERVATIONS

Abstract

Transition of an adolescent patient with chronic kidney disease (CKD) from pediatric to adult healthcare system is an urgent problem Worldwide. The purpose of this research was to generalize the idea of readiness of adolescents with CKD to transfer into adult nephrology healthcare system, to describe the challenges of such transition period and to determine the roles of participants in the process and their mutual interactions in order to develop and implement the working regional model for organizing the transition of adolescents with CKD within a clustered system of provision of specialized healthcare services. Materials and methods used: a single-center cross-sectional questionnaire surveying of adolescents and young adults with CKD regarding their readiness to transition in two observation groups was carried out on the basis of both adult and pediatric sections of the Samara Oblast Regional Clinical Hospital named after V.D. Seredavin (Samara, Russia) in Jan. 2021-March 2023. Group 1 consisted of young adults aged 18 to 22 y/o with CKD stages 2 to 3; and Group 2 included adolescents aged 13 to 18 y/o with CKD stages 2 to 5. The results were then evaluated with the TRxANSITION Index (formerly TRxANSITION Scale), PedsQL and the SF-36 questionnaire. Adolescents’ parents/caretakers took a survey on the independence of their children as well. Results: the data on the insufficient independence of adolescents were obtained, as follows: 66.7% [34.9-90.1%] (n=8) “never” took medication on their own, 50.0% [21.1-78.9%] (n=6) have never asked their physicians questions (p<0.001), 50.0% [21.1-78.9%] (n=6) “never” and 33.3% [9.9-65.1%] (n=4) “almost never” did they agree to meet with the physician (p=0.005). Adolescents experienced difficulties in both communicating and working together with a physician: 33.3% [9.9-65.1%] (n=4) and 25.0% [5.5-57.2%] (n=3) “difficult,” respectively; 50.0% [21.1-78.9%] (n=6) and 58.3% [27.7-84.8%] (n= 7) “almost difficult,” respectively (p<0.001). On the other hand, “almost everything” and “everything” do they know about their health status 47.1% [23.0-72.2%] (n=8) and 35.4% [14.2-61.7%] (n=6), respectively, of young adults with CKD vs. adolescents (p<0.001). Conclusion: structurization of the participants’ roles in the communication system “patient and his family members - medicine professionals - psychologists - social workers” contributes to the stabilization of an adolescent with CKD during the transition period.